Podcast appearances and mentions of Kathy Smith

Last week, the National Multiple Sclerosis Society and the European Committee for Treatment and Research in Multiple Sclerosis convened a meeting in Dublin, Ireland, to dive deeper into what a new framework for describing MS might look like.   There's still a tremendous amount of work to be done here. But, considering that whatever language is eventually adopted will affect every person living with MS, I want to keep you fully informed on this important work. So I'm devoting this entire episode of the podcast to sharing conversations I had with three of the attendees at the meeting in Dublin.    First, you'll hear from Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research. Then, you'll hear from Dr. Daniel Ontaneda, a neurologist specializing in MS at the Cleveland Clinic, and, finally, you'll hear from Kathy Smith, who's lived with MS for the past 20 years.   As you listen to these conversations, I think you'll hear three slightly different perspectives, but you'll also hear some of the broad concepts and ideas around which there was a high level of agreement at our meeting. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: A meeting to discuss moving to a biologically based description of MS  :22 Dr. Bruce Bebo discusses how a new framework for describing MS could impact MS research and people living with MS  3:45 Dr. Daniel Ontaneda describes some of the shortcomings of the current MS course descriptors and discusses how a new framework for describing MS could impact   people living with MS  17:34 Kathy Smith explains how current MS course descriptors fail to fully capture her experience as someone living with MS, and explains how new course descriptors could benefit people living with MS  26:24 What's next in the work to develop new course descriptors for MS  35:20 Share this episode  35:44 Have you downloaded the free RealTalk MS app?  36:03 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/403 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann https://realtalkms.com/279 RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 403 Guests: Dr. Bruce Bebo, Dr. Daniel Ontaneda, Kathy Smith Privacy Policy

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on patient engagement within the Can-SOLVE CKD Network -- a Canada-wide network of patients, scientists, and health care professionals devoted to creating innovative kidney care solutions. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full Can-SOLVE CKD Network episode.Episode Transcript:Anna:Hi everyone! Welcome to onePERspective - a bi-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous episode of asPERusual -- a podcast for practical patient engagement. My name is Anna Chudyk and I am asPERusual's host. In today's episode, Kathy will be commenting on S3E2 of asPERusual. In that episode, I sat down with Melanie Talson and Cathy Woods to learn all about patient engagement within the Can-SOLVE CKD Network, which is a Canada-wide network of patients, scientists, and health care professionals devoted to creating innovative kidney care solutions. Alright Kathy, lets turn it over to you and your onePERspective. Kathy Smith:Thank you, Anna and hello, everyone. I am speaking to you from the centre of Canada along the shores of Lake Superior, or Gitchigumi, the largest, deepest, coldest and cleanest freshwater lake in the world. I wish to acknowledge that my City of Thunder Bay is situated on the traditional land of the Anishinaabe peoples, including the Ojibwa of Fort William First Nation, signatories to the Robinson Superior Treaty of 1850. I thank our ancestral land keepers for centuries of sustainable stewardship of this beautiful area and for kindly sharing the bounties of this rich land with everyone. I also wish to express my appreciation for the significant contribution of the Metis nation. I am sorry for the mistakes made and mistreatment of Indigenous peoples by colonists in the past and I am committed to working together for truth and reconciliation. Miigwetch.If ever there was an award for a solid and sustainable engagement strategy, today's Chronic Kidney Disease (CKD) Px engagement platform would certainly be a strong contender. I am most impressed with how they have integrated the Indigenous voice and with their capacity-building training modules, including bi-directional Capacity Bridging.Melanie Talson & Cathy Woods from Can-SOLVE CKD: Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease describe their network as a national partnership of lived experience patients; learned experience researchers; laboured experience health care workers and clinicians; and leaders – the managers and policy makers. The four “Ls” work together to transform treatment and care and improve the outcome for those living with debilitating chronic kidney disease.Can-SOLVE's tagline is “the right treatment for the right person at the right time and place.” No small task when you consider CKD affects a disproportionate number of Indigenous people many of whom live in remote, even fly-in, communities. That is why I am so impressed to see that this group has a strategy for addressing that barrier to care. Can-SOLVE has an Indigenous-led partner group, IPERC -Indigenous Peoples Engagement and Research Council. IPERC's focus is on Indigenous kidney care challenges unique to this harder to reach, often underserved, group. Cathy, of the Bear Clan, is a member of Naicatchewenin First Nation in Northwestern Ontario, is the patient partner and a lead researcher of the Kidney Check Research Project which seeks to screen, triage and treat Indigenous people living in rural and remote communities in the three western provinces and British Columbia. Patient partners within both groups prioritize and co-lead research projects like this one, ensuring meaningful and relevant engagement at every stage. Furthermore, there is a Patient Governance Council – a leadership team made up of representatives of both interest groups who decide on plans and policies that affect the entire CKD community.Our speakers have done a great job describing each of the 6 Rs upon which they built their engagement platform: Respect, Responsibility, Reciprocity, Relevance, Relationships and Realness. Realness is a term I had not heard of in engagement platforms before. But I do understand and appreciate its inclusion. We need to fit our hats to the task as I like to call it. Our real life has given each of us many hats, but which shall we wear to best meet the asks of the task? Patients and providers work best when they find common ground, common interests and common language with lived experience input “as is”. Bring your real, authentic self to the table. Respect for individual differences and perspectives sees real-world impacts.Equally impactful is how patient partners like Cathy describes her involvement in CANSOLVE as healing, empowering, and deeply purposeful – creating a space for ordinary people to accomplish extraordinary things. As the famous anthropologist, Margaret Mead, phrased it; never doubt that a small group of thoughtful, committed citizens can change the world. It's the only thing that ever has.”Finally, I'd like to acknowledge CANSOLVE's Bridging Capacity. Building capacity is an integral component of patient engagement strategies. Training modules are co-designed to buildup the knowledge and provide the necessary tools for patients to engage in a research project. These helps are unidirectional in scope. So how does Bridging Capacity differ from Building Capacity? Bridging Capacity is bi-directional. Patients and providers both learn from each other. I cant think of a better tool for bridging the power differential and creating strong work relationships!All in all, CANSOLVE and IPERC have really empowered patients to enhance research relevance to better the outcome for all with chronic kidney disease.PERsonally SpeakingMy three take-aways:Could this Indigenous Partnership (IPERC) model be used to incorporate the voice of many other underserved populations – the remote; the homeless; the new Canadians? These groups are surely concerned about their health, but they do not want to, or cannot, come to our Table. So, meet them where they are at with separate interest groups run by their own leaders and their own peers. Then the leaders of the various interest groups could come together to form an overarching Senior Team. This makes for a much more inclusive and diverse Patient Engagement Platform!Capacity Bridging This was a term I had not heard of before but I very much like it for the added emphasis it brings to an engagement platform. This bridging is a bi-directional sharing of knowledge between the lived experience experts and the learned experience experts. It stresses the importance of respecting that all members of the team bring unique experiences and skill sets. This concept guides mentorship, training, and peer review practices across the network. Patient partners are highly valued for their different hats they bring to a task on the TEAM: Together Everyone Accomplishes More. Together is better!Relationship Building is at the heart and soul of every Patient Engagement Platform. It takes a patience of time and a whole lot of money. It must be accounted for in research budgets and run by a paid, highly trained and skilled multi-tasker manager. Anything less jeopardizes the success of the engagement platform and perhaps the relevance and value of the research itself.At this time, I would like to thank everyone for the privilege and the opportunity of speaking to you on these podcasts. In particular, I want to do a huge shout out to my heroine, Anna, for including me and asking me to do these podcasts. As Anna is moving forward with the pediatric and youth groups, I want a fresh voice to help her with these podcasts. But in any case, I wish Anna all the best as she goes forward with this labor of love. I can't tell you how much time and effort Anna has shown and the passion that she has dedicated to helping all patients engage meaningfully and relevantly with academic partners in research. Thank you. And happy trails, Anna. Anna:Thanks Kathy for this, and all of the other onePERspective's to date. As you know, your encouraging emails summarizing all you learned from the release of this podcast's initial episodes were the impetus for creating the onePERspective segment. I've really enjoyed hearing your reflections and collaborating with you on the creation of these episodes. Even with all your engagement related jet setting, I could also count on you to come through on your episode… and somehow find the time for it. Big hugs to you and I'm glad we have research we're collaborating on together so it's not actually a good bye. Moving forward this season, I'm going to continue with onePERspective but it's taking a different twist. A big reason why I have chosen to focus the remainder of season 3's episodes on engaging children, youth, and families is for my own learning as I expand my research program to focus on these populations. I am currently moving in this direction through a pharmacogenetics study I am collaborating on with my colleague Abdullah Maruf, as well as work I am doing with colleagues to redesign pediatric-to-adult transition care services for youth and families living with congenital heart disease. Sasha Kullman is a talented PhD trainee working under my supervision on the congenital heart disease project. Given her passion and penchant for patient engagement and knowledge translation, I thought that it would be a great opportunity for her to take over onePERspective this season, and offer a trainee perspective on her take-aways from the episodes. She's very brilliant and I can't wait to hear her episode takeaways as her insights always make me think.In the next full episode of asPERusual, I kick off the rest of this season's focus on how to meaningfully engage children, youth, and families in health research. Guests Brianna Hunt, Onalee Garcia-Alecio, and Michelle Roy, will share their experience with engaging in the iCARE study—Canada's largest cohort of youth with type 2 diabetes. We'll also discuss what makes engagement meaningful over time, the value of lived experience, and practical tips for involving youth and families in ways that are inclusive, trauma-informed, and fun. The episode is going to drop on April 28th so be sure to check it out by visiting our website asperusual.substack.com or wherever it is that you download your other podcast episodes from. If you do visit the website, be sure to check out the interactive transcript from this, and other episodes, as well as to subscribe to the podcast's newsletter! As always, you can reach me by emailing anna.asperusual@gmail.com or by adding me to LinkedIn by searching Anna M. Chudyk – CHUDYK.Until next time, thanks again for tuning in and let's keep working together to make patient engagement the standard, or asPERusual. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on Building capacity with the SPOR IMAGINE Network. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full SPOR IMAGINE Network episode.Episode Transcript:Anna:Hi everyone! Welcome to Season 3's first episode of onePERspective. As a reminder, this is a tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week's episode of asPERusual -- a podcast for practical patient engagement. My name is Anna Chudyk and I am asPERusual's host. Before I turn things over to Kathy to provide a recap of Season 3 Episode 1, I want to do a huge shout out to her. Kathy, you faced huge tech related barriers that would have made most other people peace out on making this episode a reality. But you kept trying all week and persevering and here we finally are. Something you kept saying was, I don't want to let you down. But the thing is, I don't think you could ever let me down if you tried. Our long-standing bond grew out of and transcends or working relationship, and that's what patient engagement is all about. So thank you so much, Kathy, for loving this labor of love of a podcast as much as I do. And now let me turn it over to you for your onePERspective.Kathy Smith:Thank you Anna and hello everyone. First off, I would like to gratefully acknowledge the ancestral keepers of the beautiful and bountiful land upon which my city of Thunder Bay was built about a quarter of a century ago. We are at the epicenter of Canada, at the head of the greatest, deepest and cleanest of the Great Lakes, Lake Superior, the mighty Gitche Gumee. This area is the traditional territory and homeland of the Anishinaabe People, which includes the Ojibwa/Chippewa of Fort William First Nation, signatories to the Robinson Superior Treaty of 1850. My father's family migrated from Sweden to Turtle Island (Canada) in the late 1800s. They all settled in Minnesota, but only my grandfather preferred to live and work in Canada as a lumberjack. My mother's family also first migrated to America way back in the early 1700s. A family joke is that they told the Mayflower where to land. They moved first up to New Brunswick, as United Empire Loyalists, with some settling here to work in the forest building and serving the railway. Both families chose to live and thrive here in pristine northwestern Ontario, and they gratefully spoke often of the huge debt we owed to its original land keepers. Whether as a child in the family car on a Sunday drive to nowhere, or as a mom camping everywhere with my own four children, or now just meandering with my hubby along the majestic woodland trails, I am in awe of the breathtaking, balance, and restoring beauty of our natural surroundings. I respect the ancestral stewards for their profound spiritual connection to Mother Earth and all the living things that guided them to practice reverence, humility and reciprocity with her gifts of pure air, clean water, mineral rich soil, and abundant flora and fauna. I am very grateful also for the significant contributions made by the Metis Peoples, both past and present. Miigwech!Thank you to our Building Capacity with SPOR IMAGINE guests Aida Fernandes (executive director), along with Dr. Deborah Marshall and Sandra Zelinsky, co-leads of the Patient Engagement Subcommittee. You all wear different hats with your lived and work experience backgrounds, but you are all laser focused on partnering to better manage inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS). Your IMAGINE network is shedding some much needed light on these puzzling and troubling chronic disorders. I have seen a close friend's partner struggle and stumble with Crohn's disease, one of the inflammatory bowel diseases. Needing to be hyper vigilant with what he eats and ever mindful of maintaining a work life balance is difficult. And he pretty much had to learn by trial and error. He recently passed away from pancreatic cancer, but I know he would be extremely delighted to see that the Mind And Gut Interactions Cohort (MAGIC) Study focuses on more proactive and preventative strategies than on reactive treatment regimes. WOWZA! Almost 8000 subjects were recruited into the pan-Canadian MAGIC study by the IMAGINE network. Participants were retained in the study in high numbers even though they had to submit quarterly blood, stool, and urine samples. How did IMAGINE accomplish this incredible feat? With the aid of a very strong, very engaged, very well trained and supported patient partner group. 40 patient peer-to-peer mentors conducted face-to-face and/or online virtual contacts with the participants in the study to encourage and support them. The patients engaged as partners in the research had flexibility in how and when they could contribute to the study. The IMAGINE network met patient partners where they were at and what they were comfortable with contributing. Anna compared this to Roger Stoddard's choosing patient engagement tasks from a menu analogy, because appetites are all different when it comes to the amount of engagement one can or will want to do. Patient engagement was kept strong by relying on this flexibility, plus good support, plus capacity building and first and foremost, once again, respectful relationship building. The unique but equally valuable voices and perspectives of the 4 Ls that Linxi Mytkolli told us about in asPERusual's Diabetes Action Canada podcast delivers the lived, the lovers, the learners (so the academic leads) and the laborers (all the clinicians) blended together to make this one strong, patient centric study. Patients and providers also had access to tools necessary to support their preferred level and type of engagement. Anna has posted a really good list of these resources recommended by today's guests. In particular, they highlighted the free online patient and community engagement research (PaCER) program, a one year certificated course from the University of Calgary. It teaches patient research partners how to create, conduct, and even lead a research project. In fact, that's the requirement for the certificate. Another way patient engagement was supported reached beyond taking part in the research study process. IMAGINE empowered patients to share their lived experience stories. Having just completed this task myself, I sure wish I had access to that training with the help from patient mentors like Sandra. Storytelling is harder than it looks. All in all, this is a very strong study with a very strong network of networks and a very strong method of patient engagement. I wish the team much success. Miigwech. PERsonally SpeakingMy three big takeaways will sound pretty familiar. The secret sauce to any successful patient engagement in research platform is to overcommunicate at the start. Make friends. Take all the time at the start to develop the bidirectional relationships needed to build a strong team of friends. Teamwork makes the dream work. Know the end game goal. List the tasks needed to get there, and then collaborate as a team to “match the hat to the task.” Impressed IMAGINE seems to have no power differential barrier at play. Regular feedback and ongoing evaluation can help maintain a productive and respectful partnership. If we focus research funding on lived experience patient priorities like MAGIC's mind-gut biome connection study, it not only enriches the research process, but also ensures that the outcomes are more relevant and beneficial to those who need them the most. Patients are the alpha and the omega of health care. Thank you to SPOR Strategy for Patient-Oriented Research for all your resource allocation for studies that bridge the gap between science and experience. Working together, maybe we will get more proactive strategies to better self-manage many chronic diseases. I'm very optimistic MAGIC will make some magic happen for patients with IBD and IBS.Anna:Thanks so much Kathy for sharing your onePERspective. I think this is my favorite one yet. Something that really also stood out for me about IMAGINE was the pivotal role that patient research partners play in shaping research within the network and throughout the research cycle. The MAGIC study is such an impressive undertaking, having enrolled almost 8000 patients in a Pan-Canadian longitudinal venture. To see meaningful and active engagement interwoven into it is beyond heartening and definitely something we can all stand to learn from. If you haven't checked the original episode out, it is Season 3 Episode 1 of asPERusual and can be accessed through visiting our website asperusual.substack.com or wherever it is that you download your other podcast episodes from. If you do visit the website, be sure to check out the interactive transcript from this, and other episodes, as well as to subscribe to the podcast's newsletter! As always, you can reach me by emailing anna.asperusual@gmail.com or by adding me to LinkedIn by searching Anna M. Chudyk – CHUDYK.In two weeks I'll be releasing Season 3 Episode 2 of asPERusual, where I sit down with Melanie Talson and Cathy Woods from the Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) network. Be sure to tune in if you want to learn about their systemic approach to patient engagement, including ways in which the six R's ( Respect, Responsibility, Reciprocity, Relevance, Relationships, and being Real) permeate all aspects of the network's work, and the role of the network's Indigenous Peoples' Engagement and Research Council (IPERC) in shaping engagement and care for Indigenous Peoples and communities across Canada.Until next time, thanks again for tuning in and let's keep working together to make patient engagement the standard, or asPERusual. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Yesterday, it was revealed that Gayundah Arboretum Park in Woody Point would be closed, forcing 13 people experiencing homelessness to find new shelter. The homelessness crisis is impacting the most vulnerable people in the community, with domestic violence victims being rehoused in tents. Project Manager at Defenders for Hope, Kathy Smith, told Gary Hardgrave on 4BC Drive that domestic violence victims are among those living in tents in Logan. "We work with the housing, the local council, and YFS...and we supply them with new tents when the storm comes through, we supply them with food every day," Ms Smith said.See omnystudio.com/listener for privacy information.

Across Queensland, breaches of domestic violence orders have quadrupled in the last decade, and the domestic violence crisis in Logan is reaching a boiling point. Police in Logan are overwhelmed, with more than 100 domestic violence calls going unresponded to just hours before the tragic case of Destiny Otton-Rakuraku, who was allegedly set on fire by her ex-partner. Kathy Smith, Project Manager at Defenders For Hope, a Logan-based charity on the front lines of this crisis, told Gray Hardgrave on 4BC Drive that they have to resort to giving tents to DV victims with the current housing crisis.See omnystudio.com/listener for privacy information.

Bras Across the Causeway is a charity run organized by Kathy Smith. The event was inspired by a conversation she had with radio host Matt McCoy in 2016 about finding a way to give back to the community and support breast cancer patients. They came up with the idea of a 5k run with a unique twist: stringing bras across the causeway. They started collecting donated bras and have amassed thousands of them, which they string up during the event to raise awareness for their cause.The money raised from the race entry fees goes into an account to support breast cancer patients' needs, such as gas, groceries, housing, clothing, daycare, and even covering copays and special medical tests. The funds are managed by the Providence Foundation, which works closely with patients to understand their unique needs.The race day is a lively and heartwarming event, featuring a survivor tent, a survivor walk, a 5k run, a one-mile run, and various vendors, including Cammie's Old Dutch ice cream and Hall's sausage. The event is a celebration of community support and a testament to the power of people coming together to help those affected by breast cancer. It's grown in popularity over the years and continues to positively impact the local community.Kathy Smith - https://www.facebook.com/kathy.b.smith.39Races MentionedBras Across the Causeway https://www.brasacrossthecauseway.org/Boo Krewe 2 https://runyourstory.com/event/boo-krewe-2-2023/The Hot Trot at LuLu's https://coast360.com/events/lulu%E2%80%99s-hot-trot/Shout OutsMatt McCoy https://www.facebook.com/matt.mccoy3Jim BroganLone Palm Parrot Head Society https://lonepalmfoundation.org/Parrot Heads in Paradise Meeting of the Minds https://phip.com/meeting-of-the-minds/Providence Foundation - https://www.facebook.com/providencehospitalfoundation/Keely WallJosh Foster https://www.facebook.com/joshua.foster.3382Carrie https://www.facebook.com/TheCookeryMobile/Courtney with Sunshine CommunicationsPanini Pete Foundation https://www.prfoundation.net/Pete Blohme https://www.facebook.com/chefpaninipeteJody Blohme https://www.facebook.com/jblohmeNick DiMario https://www.facebook.com/nick.dimario.94Support the showFor more details on Run Your Story happenings, including signing up for our upcoming training program, visit https://runyourstory.com/For web development, coding tutoring, or tech services, visit https://gaillardts.com/Go Run Your Story and take a piece of this story with you! Follow us on Facebook and Instagram for the latest news on upcoming episodes. Support me on Patreon!Can't wait to hear Your Run Story!! Thank you to all of our Patreon supporters!Kristen RatherSteve TaylorMary TrufantSuzanne CristSuzanne ClarkAnna SzymanskiDave McDonaldKarla McInnisJames ContrattoJordan DuBoseCristy EvansSharonda ShulaNell GustavsonMeredith NationsAllyson SwannChris Strayhorn

County Market on 6th Street is the location for the show as Washington Street Mission conducts its Food and Supply Drive, with guests including former board member Kathy Smith and Mission Director Jarid Brown.See omnystudio.com/listener for privacy information.

Welp, it's a wrap folks! Welcome to the last episode of Season 2 of asPERusual and onePERspective. In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR CHILD-BRIGHT. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full SPOR CHILD-Bright episode and learn more about engaging children, youth, and families in research.Episode Transcript:Hi everyone! Welcome back to onePERspective, a tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week's episode of asPERusual – a podcast for practical patient engagement. My name is Anna Chudyk, and I am asPERusual's host. This is officially the last episode of season 2 of asPERusual, and onePERspective, by association. But have no fear, I'm already booking tapings for next season, so we definitely do plan to be back sometime in the fall again.On this episode of onePERspective, Kathy is recapping our previous episode that featured Carrie Costello, Annette Majnemer and Gillian Backlin from the Strategy for Patient-Oriented Research (or SPOR for Short) CHILD-BRIGHT Network. The network is funded by the Canadian Institutes of Health Research – Canada's national health research funder – with the aim of making the future brighter for children with brain-based developmental disabilities and their families through patient engagement (also referred to as patient and public involvement) and patient-oriented research. If you're unfamiliar with the concepts, patient engagement actively and meaningfully involves patients and caregivers as members of research teams, while patient-oriented research incorporates patient engagement into research that focuses on patient-identified priorities and outcomes. Now that we're all hopefully on the same page, I'll hand it over to you Kathy for your onePERspective! Kathy Smith:All of the patient engagement entities funded by Canadian Institutes of Health Research (CIHR) under Canada's Strategy for Patient-Oriented Research (SPOR) have given us insightful and unique models for patient and public involvement. CHILD-BRIGHT is a national network made up of a team 15 funders, 500 researchers, as well as clinicians, policy-makers, parents. What stands out though is the inclusion of young partners with lived, or living, experience (PWLEs). CHILD-BRIGHT authentically integrates children as active team members in all research projects and advisory activities. They are all focused on making brighter futures for children and youth with brain-based developmental disabilities. Hearing Carrie, Annette and Gillian describe the depth and breadth of engagement of their youth sector was something new that piqued my interest. “Nothing abut me without me” is really in play. We listeners learned about special considerations related to authentically engaging younger people and their families. We were given how-to methods we could now incorporate within our own engagement communities. As well, Carrie, Annette and Gillian provided examples of where the PWLE voices powered moving research into improved practice and policies for all children living with brain-based developmental challenges.For proof of concept, Id like to share a couple of my own personal affirmations of the power of the voices of children with lived experience can contribute. At our regional hospital, a very young child had endured repeated surgeries. Finally, he asked if he could be taken into surgery in a wagon, instead of the big scary gurney. Now, all children at our regional hospital enjoy that wagon ride into surgery. A child engineered this patient-centric improvement in care! A powerful example of “for patients by patients” done by a young PWLE! I'll share a more personal example convincing me of the power of youth voices sharing their lived experiences to improve patient care. Bloodwork is frequent when you are undergoing chemotherapy. Veins are exquisitely tenders making the draws quite painful. A 7-year old lad in an adjoining cubicle was to receive his bloodwork. He had his arms folded. He refused to unfold them because he saw the technician was not going to use the special equipment for sensitive veins. He stood firm repeating; “I will not unfold my arms until you bring in the “butterfly” – a much smaller, gentler apparatus for blood draws. Asserting his lived experience knowledge and insisting on more responsive patient-centric care, he helped me dealing with my own sore veins and dread of the draw. I asked for, and got, the butterfly too! And that made all the difference. I was so impressed by, and eternally grateful for, that young lad for voicing his concerns and correcting a gap in patient care.CHILD BRIGHT examines many gaps in (1) early identification; (2) innovative technologies and (3) rehabilitation with input from the entire team. Parents like Carrie, and patients like Gillian, are co-investigators on research projects surrounding their three themes that were developed in partnership with parents and youth: projects that optimize developmental outcomes; projects that integrate mental health support into care for patients and their families; and projects that redesign health care services to be more responsive to family needs.Now entering CHILD-BRIGHT's second phase, the focus will shift to implementing the knowledge gleaned during the past six years in Phase One. I'd like to learn more about their individualized knowledge translation hubs targeted either for clinicians, for parents, or for policymakers always ensuring the concepts equity, diversity, inclusion, decolonization and Indigenisation are integrated into the hubs and in all the research activities they undertake.As for patient involvement, Carrie describes her role as the “connector” between the Steering Committee, the other Patient Liaisons and the public at large. Similarly, I've referred to my PPI (Patient and Public Involvement) role as that of a bi-directional “honey bee”. Happy to see how their use of an expert to help them deliberately recruit new members thru targeted social media sites really paid off. And using their “matching tool” then fits the right Patient Liaison to the right project based on the specific information PWLE's are asked to supply in their onsite application.Gillian describes her role on the Youth Advocacy Council as that of a consultant – or collaborator - providing the voice lived experience on all committees and working groups or advising researchers. Really great to hear Gillian tell us how much her Youth group has grown and how they now have incorporated Liaison Partners from 13 First Nation groups. CHILD-BRIGHT's uniqueness centres on in its focus on youth and the extent of its inclusion of youths with lived experience in all aspects of engagement in research. And CHILD-BRIGHT shares the common struggles of other patient engagement in research (PER) entities surrounding recognition, remuneration and evaluation of success. It is likely even more challenging dealing with special issues working with youth as well as working with adults. Their heart is in the right place. They are united in purpose and their focus is on an underserved group: children and youth with brain-based developmental disabilities. I am grateful this podcast enlightened me about CHILD-BRIGHT. Thank you Anna, Annette, Carrie and Gillian!PERsonally Speaking1, Really appreciated learning about a patient engagement group of children and youth and their families. Really impressed at the depth and breadth of youth participation – even as co-authors of research!2. Again, we encounter the common theme of the importance of authentic bi-directional relationship building and the patience of time and whole lota money needed to build a successful and meaningful collaboration between patients and practitioners and policymakers.3. And again we see a PER group still working out the fine details surrounding recognition, remuneration and evaluation of engagement.Points to PonderFinal words to close out season 2. Each specific engagement entity will always have their own special priorities to deal with in their own special way, But all sites have common features of PER that I hope we can amalgamate into one, standard pan-Canadian PER agency. This common entity would have a repository matching a researcher request with best-fit, vetted PWLEs. And it would include dedicated PER Navigators to handle the administrative tasks for both the PWLE's and the researchers.Wishing you all a happy, safe and healthy, fun-filled summer!Anna:Thanks so much Kathy. I can't thank you enough for all of the time and energy you have poured into onePERspective and the wonderful insights that you have brought to all of us. Thank you to all of our listeners; to those of you who have helped spread the word about the podcast and sent me supportive emails; to our guests who have shared their time, experiences, and wisdom; to Bryn Robinson and Roger Stoddard who were my original cohosts and helped make this podcast a reality; and to Bre Kelly and Sasha Kullman who have been huge helps behind the scenes. Lastly I would also like to thank my mentor Annette Schultz and the CIHR POR Awards - Transition to Leadership Stream Phase 1 and 2 awards for their support in helping me establish my patient-oriented research program, which led to this podcast.I hope you all have a great summer and I look forward to coming back with Season 3 sometime in the fall. If you haven't done so already, I encourage you to subscribe to our podcast's newsletter by visiting asperusual.substack.com so that you are kept up to date with podcast updates, or to add me to LinkedIn or X by searching Anna M. Chudyk on your web browser as I also post notifications there. If you have any ideas on how we can make asPERusual even better next season, be sure to send me an email at anna.asperusual@gmail.com. Big hugs to you all and until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on Patient Advisor Network's Reimagining the Research Landscape report. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full Reimagining the Research Landscape episode.Episode Transcript:Anna:Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith recaps the previous week's episode of asPERusual – a podcast for practical patient engagement. Today's episode of onePERspective is special for two reasons.For starters it marks the first time that Kathy and I have actually seen each other in-person. Although we've worked together for over two years in varying capacities, we hadn't met each other until a few days ago, when Kathy came into town to help co-lead data collection for a participatory design study we are both a part of. As we met I couldn't help but think of what Alies, our previous episode's guest had said when she appeared on Season 1 Episode 8 of asPERusual. That is, how funny it is to know someone for a long time as a floating head and then to finally meet them in person with a whole body attached. I'm so glad we finally got a chance to hang out in-person Kathy and I hope the opportunities to do so keep coming. And for anyone who is interested, check out our free newsletter or website (asperusual.substack.com) for a photo from our meeting.Another reason this episode is special is that it focuses on a detour from our regular season 2 programming. That is, the episode focused on a patient-led report from our friends at the Patient Advisors Network, instead of a Strategy for Patient-Oriented Research funded entity. Although I do love patterns and neat boxes, I felt that this deviation was very important given the novelty and findings of this Reimagining the Research Landscape Report, highlights of which I'm sure Kathy will cover next.Alright so before I turn it over to Kathy, there are some acronyms and contextual points I will quickly cover to ensure that all of our listeners out there are able to follow along:The Canadian Institutes of Health Research (or CIHR for short) is Canada's national funder of health research.In approximately 2010, CIHR established the Strategy for Patient-Oriented Research (or SPOR for short) to champion and support research that focuses on patient-identified priorities and outcomes and involves meaningful and active collaborations between patients, care partners and researchers (the latter of which is referred to as patient engagement in research). SPOR is recently undergoing a revamping, which they have called the SPOR Refresh, which involves among other things, consultations with the patient-oriented research community.The Patient Advisors Network (or PAN for short) is an independent, non-profit pan-Canadian organization comprised of patients and care partners that was asked by SPOR to carry out their own consultation activities to help inform the SPOR refresh.Ok so I hope that was more helpful than confusing, and I do encourage everyone out there to listen to last week's episode or check out our website (asperusual.substack.com) for today's interactive transcript that will help make things even more clear. And with that, over to you Kathy for your onePERsective!Kathy Smith:Thanks, Anna. It was really a pleasure to finally meet you in person, and I'm looking forward to many more partnerships as we move forward!This is a unique SPOR initiative that we're looking at today. The pan-Canadian Patient Advisors Network (PAN) was tasked to survey patients engaged in research experiences right across Canada. Alies Maybee and Donna Rubenstein, along with a patient steering committee, created and produced an innovative and precedent setting experience survey to inform decision makers of POR experiences. A whopping 262 patients engaged or wanting to become engaged in research responded. What set this survey apart from the many existing surveys is that the questions were asked and supplied solely by patients for patients. As Donna explained, “the questions we asked were not the cookie cutter, usual survey questions. We asked questions harvested from the perspectives of what patients identified themselves as important to understand.” As a result, they captured new data, opening the door to better understanding the patient perspectives engaging as a partner in research. Some examples of questions included:When you contributed, did you feel your voice was heard? Was your input valued and acted upon? Did you feel comfortable asking questions? Did you experience covert or unconscious bias for not being an academic? Did you feel you were making an impact or made an impact? Was your role integral, significant, or tokenistic? The answers did not surprise me. Overwhelmingly, a huge number of the 262 respondents felt that they were discriminated and disrespected because they were not academics. They did not feel their voices were heard as equals. The traditional research landscape does not presently equally value the voices of all its contributors. But in my experience, I believe they are fully on board to transforming that ecosystem by learning from us. I commend Alice and Donna and their team for capturing data to help shift this paradigm. Another strong survey finding that will come as no surprise, but is now supported with strong evidence, is that the research community is a closed shop that is not great at communicating with the public community. We need to change the research community's SOP, or standard operating policies and procedures, in order to change the research landscape. I really like the way Alies organized the findings at three levels of research environment to consider for changing: At the micro level, the research team most closely aligned with the patients engaged in research. At the meso level, administrators at universities and other research institutes. They are removed from the action, but are tasked by the research funder to manage the research grants. This is a major stumbling block and a bottleneck for researchers who want to and do engage patients in research — the time consuming, complicated, creeping barrage of administrative bureaucracy. At the macro level, the major research funders like the Canadian Institute for Health Research are next level removed from understanding and championing POR. Yet they are the ones who set out the research grant requirements, the timelines for deliverables, and the criteria for who should and who should not be funded. There are many other interesting and innovative suggestions for this transformation in the research ecosystem that can be found in the Patient Advisor Networks' pan-Canadian Patients Engaged in Research survey. If you'd like to check it out for yourself, the name of the report is Reimagining the Research Landscape. Personally speaking:The patience of time needed to build meaningful and respectful relationships is the cornerstone to successful patient engagement in research. Funders need to acknowledge its importance and to fund this fundamental first step. We must flatten the power dynamics between the patients and researchers by meeting people where they are at. Bring your authentic whole self to the table. Listen attentively and be open minded. We are all more than just our health condition. Nothing about me without me is the ticket for patients to rightfully participate in patient centered research.Anna:Thanks so much Kathy. One of the many things that I also enjoyed about Donna and Alies' episode was what I affectionately term “bonus content.” These were additional insights into important topics that flowed out of our conversations, such asexpected and unexpected benefits of patient-led research;tips for how to support patient partners in bringing diverse perspectives to engagement opportunities through the establishment of patient advisory councils comprised of large numbers of patient partners. This is an idea I've been looking to incorporate into my own research program and it was great to hear more about it in action.Until next time, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you're there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In the process of creating this show, my efforts and explorations with composition on the heated plate have led me to variations in technique, including the addition of hand-carved printing blocks inspired by a recent trip to Ireland. My family roots are deeply embedded in the history of the landscape there, shifting my work from above to below, and back again.” – Kathy Smith more

5.15.24 // women's study (kathy smith)

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR Canadian Data Platform. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full SPOR Canadian Data Platform episode.Episode Transcript:Anna:Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week's episode of asPERusual – a podcast for practical patient engagement. Today, Kathy will be recapping our episode that featured Catherine Street, Frank Gavin, and Kim McGrail from the Strategy for Patient-Oriented Research (or SPOR for Short) Canadian Data Platform. The platform is funded by the Canadian Institutes of Health Research – Canada's national health research funder – with the aim of helping to create a multi-jurisdictional data access support system. Importantly, the SPOR Canadian Data Platform also does a lot of impressive work to engage Canadians in conversation about their health data, including how its collected, used, and applied to better health outcomes and create a more equitable healthcare system. So without further ado, take it away Kathy with your onePERspective.Kathy Smith:Thank you for that, Anna. In the previous six episodes, we have been introduced to patient facing engagement platforms funded by SPOR. This time, however, it's a little different. Catherine Street, Kim McGrail, and Frank Gavin share a clinician scientist facing SPOR platform, the Canadian Data Platform, or the SPOR-DP for short. Dr. Catherine Street described SPOR-DP's main function as to bring together multi-regional data for improvement, innovation and evaluation essential to a learning health system.How does data collection intersect with patient collaboration? Frank showed us how patients do play a large role in helping shape the data platform by supporting research that focuses on patient identified priorities. SPOR-DP has a public advisory council. It's a forum where the public and the professionals, the policymakers and the researchers and the scientists meet to discuss issues around data collection, data sharing, and data access. I think everyone will agree that the number one data issue is transparency and trust. The less transparent the data collection and sharing processes, the less trust the public has in its information.Other data deliberations surround:the security of collection and safe storage of the data,the equity of access to the data,the types of data collected or missed,the privacy and ownership of the data,who controls the use of the data, andwho can benefit from the health care data collected?What we all want to know is how do the data collected impact the health of people and/or communities?That's a tall ask of the patients and professionals on this program, but access to this pan-Canadian data repository can build a better understanding of priorities that are funding the research that moves science ahead and, as a result, better health care for all. I think that Frank zeroed in on one of our basic human instincts the why, the how, the when and the where. Curiosity. Curiosity is the driver of interest in data.As a learning system, we all want to use data to make sure we are doing things that are helping address gaps, reduce errors and workloads, support underserved communities, and of course, do no harm. Like Frank, I too have experience with members of my family who face the inter versus intra provincial discrepancies in access to treatment and/or drugs. Perhaps pan-Canadian population studies with DP's repository hopefully will show policymakers the pressing need to reduce this error. No one should be denied access to treatment by virtue of geography or provincial boundaries. We do need a pan-Canadian management board to address this inequity. Yes, health care is a provincial jurisdiction. But once again, if the pandemic taught us anything, we go further, faster, better when we communicate and collaborate and share our findings as well as our resources. Sharing is caring.The biggest takeaway for me from the SPOR Data Platform presentation is their laser focus on making data much more accessible to researchers and decision makers. Data is a powerful tool. The choice about how it gets deployed is ours because data drives decisions. A streamlined, simplified process for requesting comparable data from across the country will create new opportunities for researchers, says Dr. Kim McGrail, scientific director of the SPOR-DP.Personally speaking:If the pandemic taught us anything, it was that when we combine scientific and clinical with public expertise in a collaborative, interdisciplinary environment, we can move at warp speed to invent and apply new treatments and technologies. Can SPOR's jurisdictional linkage of population level data, also known as Big data, be a game changer for health research and researchers?SPOR combines a diversity of voices that span a variety of disciplines, geographies, cultures, and behavioral experiences with the scientific and clinical experts. This is a strong and powerful management strategy for the data platform.I have heard it said you can have data without information, but you can't have information without data. Did we all watch the movie Moneyball, about the down and out Oakland A's baseball team? They took a chance on a statistician, Billy Bean, who collected and analyzed data on every player. At first, everyone laughed at that idea, but we all know the outcome — data management proved a powerful tool in sports. Can you think of any team that doesn't do that today? So we have a robust data management tool here in SPOR-DP and I'm glad we have a centralized data management system going on.Anna:Thanks so much Kathy. I always love listening to your key reflections and their applications to moving our health system forward. Something that I have been reflecting on since we shot and aired SPOR Data Platform's episode is the importance of bringing patients and public into conversations about their health data, both to help direct, and address fears and uncertainties about, these directions moving forward. Nothing about us, without us, as you always say Kathy. And boy does this ring true here. The SPOR Data Platform definitely deserves to be commended for all of the patient and public outreach they embed into their activities.Their work also makes me think of other great patient public outreach that we have going on in this space, like through the PXP – for patients, by patients – initiative led by my friend and asperusual season 1 guest Dawn Richards, which holds regular webinars that feature patients and the public talking about key issues related to patient engagement in research. It also makes me think of all of the great work that our friends at the Patients Advisors Network have been doing to help bring and support patients and the public into the patient engagement and healthcare advisor realms.This actually brings me to our next episode, which will be airing on Monday, June 3. In it, the ever awesome Alies Maybe and Donna Rubenstein will be coming on to discuss the Patient Advisor Network's recently released report titled, “Reimagining the Research Landscape.” The report is freely available if you go to patientadvisors.ca. I know that this episode is a bit of a sidestep from our season's theme of focusing on SPOR-funded entities, but the report is affiliated with SPOR's refresh activities and really brings to the forefront patient and public perspectives on the future of patient engagement and patient-oriented research in Canada. If this topic is of interest to you, then you should also consider reading a study that my colleagues and I recently published in BMC Health Research Policy and Systems titled, “Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers.” It's free to read through the journal, so give it a Google.Until next time, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you're there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Listen in as Kathy Smith talks about David and Goliath!

As we age, our bodies undergo biological changes. Our immune system changes. Our brain changes with age. Our cognitive abilities change, as do our physical abilities. These changes impact everyone. But these biological processes may impact people with MS differently. And MS may impact these biological processes differently. Just a couple of weeks ago, the International Advisory Committee on Clinical Trials in MS brought together 100 top experts for a 3-day workshop dedicated to exploring how these many and varied changes can impact MS care. In Part 2 of our coverage, we're taking you back inside this workshop, where you'll hear from some of the top MS researchers and clinicians who participated in this important meeting. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We continue our coverage of the Aging and MS Workshop  :22 Dr. Sarah Morrow and Dr. Yinan Zhang discuss survey results which showed what neurologists and other members of the MS care team see as "gaps" in delivering treatment to patients as they age with MS   1:45 Dr. Giuseppe Portillo describes how artificial intelligence can be used to analyze "brain gap" and predict future MS disease progression  13:03 Dr. John Corboy shares results from two studies that focused on discontinuation of disease-modifying therapy for patients over the age of 60  20:31 Kathy Smith talks about the importance of including older people living with MS in clinical research  31:00 Share this episode  42:43 Have you downloaded the free RealTalk MS app?  43:03 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/349 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1) http://www.realtalkms.com/348 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 349 Guests: Dr. Sarah Morrow, Dr. Yinan Zhang, Dr. Giuseppe Portillo, Dr. John Corboy, and Kathy Smith Privacy Policy

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR Diabetes Action Canada. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full Diabetes Action Canada episode. Episode Transcript:Anna:Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week's episode of asPERusual – a podcast for practical patient engagement. Today, Kathy will be recapping the episode in which Tracy McQuire and Linxi Mytkolli came to talk about the Strategy for Patient-Oriented Research Diabetes Action Canada, or DAC as its known for short. In case you haven't listened to that episode, Diabetes Action Canada is a network of patients, care partners and researchers that work together to identify the health concerns of those living with diabetes and co-create research projects to address them. It is funded by the Strategy for Patient-Oriented Research, also known as SPOR for short, which is a national coalition that was created by Canada's major public funder of health research to champion and support patient-oriented research. Alright — take it away Kathy with your onePERspective.Kathy Smith:Building equitable relationships is the cornerstone of an engagement strategy. Never underestimate the time it takes to build trust, transparency; understand and address/accept the inevitable power imbalances. Over communicate. Over explain. That was one of the many strong messages shared by Tracy McGuire and Linxi Mytkolli of Diabetes Action Canada. And how many times have we heard that very same message from our other engagement platform podcasters? Relationship building takes a patience of time to do it right. Once everyone gets on board and speaks the same language, you can proceed full steam ahead!Something remarkable and perhaps unique is that DAC has a dedicated patient engagement navigator/manager on staff. What a thrill to hear Linxi and Tracy single out this dedicated manager position as an absolute “must” to set everyone up for success with patient partnering in research. The Navigator is a “niche role” that can't be filled by just anyone. It requires someone laser focused, experienced, and well-educated in team building. This dynamic multi-tasker must train, upskill, mentor, facilitate and co-ordinate events. The Navigator communicates with each group individually and collectively. That's a lot of work and a lot of hats to wear! And Linxi wears yet another hat to balance the wants and needs of her four “L” partner groups: the Lived — the people who have had the healthcare experience;the Loved — the care partners for the patient;the Learned — the academics;the Labourers — your clinicians and co-ordinators.While the 4 “L”s contribute uniquely important lived experiences and expertise, each speaks with their own jargon. So, like and orchestra conductor, the navigator must blend these lexicons into a common language. “Re-calculating” as Siri tells us - aligning to collaborate, to set the goals and logistics of a co-designed study.I was thrilled to hear Tracy describe how DAC is now gathering patient ideas for research studies and then helping patients put their ideas into research proposals as lead researchers. For patients by patients – that's quite a mindful, patient-facing innovation. Standardized screening for diabetic retinopathy led by Dr. Valeria Rac was one such study completely driven by patient partners!DAC stands out for its depth and breadth of patient partnership opportunities anywhere along the study continuum and for all the training partnerships that they have established as well. It's nice to see DAC's emphasis on evaluation. That to me addresses a big need in patient engagement. What is our value? How effective are we? What has worked well? What do we need to re-calculate? I was impressed that DAC is working at two levels with their researchers including the patient partners and with their policy makers to measure the impact of patient engagement in research. With input from all stakeholders, they have Key Performance Indicators (KPIs) - quantitative and qualitative measures of effectiveness. Tracy and Linxi, you certainly have shown DAC has a very robust engagement strategy. Personally speaking, points to ponder 1.    I love, love love Linxi's four “L's”! What a great way to describe the key stakeholders involved in Patient Partnering. I think one more L needs to be in the mix…The LEADERS – the decision makers and the funders – the organizations who give the projects their fuel. Maybe LEADERS feel they need to stay at arms length for impartiality. But I believe PER platforms would be better served if the LEADERs learned more about and better understood patient engagement in research. Research pivots on funding opportunities.2.    PER costs, including administrative tasks, should become a specific line in the budget funding formula. PER management is often relegated to an add-on status – a strain on an already stretched research budget. And the time to administer PER tasks is usually piled onto an already overwhelmed researcher.3.    Every patient engagement platform podcast so far has stressed the need to take the time to build a safe space where equitable relationships can flourish. It's all about respect. And it takes a patience of time to do it right.4.    If every co-design research group could hire a highly educated, highly skilled, focused patient engagement navigator like Diabetes Action Centre has, that would be a dream come true!Anna:Thanks so much Kathy for your onePERspective. One of my many favourite things about the Diabetes Action Canada episode was all of the thought that Tracy and Linxi have clearly put into creating environments that truly foster meaningful and active partnerships. I also really appreciate their ability to provide very in-depth and descriptive answers and then scale back and also provide a high level summary of the big picture, increasing the accessibility of their messages to a wider audience. If you haven't listened to the episode yourself, something else that I want to point out is that we spent a lot of time discussing evaluation in the context of patient engagement. Here, Linxi and Tracy did a great job of providing useful information about how they frame and measure different key performance indicators within the network. They also shared their intuitive approach to asking patient partner focused evaluation questions such as “what do you hope to bring to this opportunity” and “what do you hope to get out of this opportunity.” This direct and meaningful approach towards planning and evaluating patient engagement opportunities is something that I'm definitely going to bring forward in my own work. Looking ahead — on our next episode of asPERusual, slated for release on May 12, I will be speaking with guests Catherine Street, Frank Gavin, and Kim McGrail from the Strategy for Patient-Oriented Research Data Platform. We'll be talking about their work to engage Canadians in critically considering and reimagining the possibilities for their personal health data! Until then, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you're there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode focused on the SPOR National Training Entity (NTE) Passerelle. She also leaves you with "points to ponder," including her vision for the future of Canadian patient engagement in research based on her personal experiences and all we've heard in Season 2 to date. Whether you haven't yet listened to last weelk's episode or you have and are interested in hearing someone else's take on it, this short (~10 minute) segment is for you! Episode Transcript:Episode Transcript:Anna:Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week's episode of asPERusual – a podcast for practical patient engagement. Today, Kathy Smith will be discussing the episode in which Annie LeBlanc and Yvonne Pelling came to talk about the Strategy for Patient-Oriented Research National Training Entity Passerelle, or NTE as its known for short. The Strategy for Patient-Oriented Research, also known as SPOR for short, is a national coalition that was created by Canada's major public funder of health research, the Canadian Institutes of Health Research, to champion and support patient-oriented research. As a reminder, patient-oriented research focuses on patient and public identified priorities and outcomes and engages patients and the public as members of the research team (which is referred to in Canada as patient engagement in research). The NTE is a network of networks that was funded by SPOR to increase capacity for patient engagement and patient oriented research. You might want to check out our website, asperusual.substack.com, if you want help keeping all of those details straight. Ok. Enough from me. I'll turn it over to you Kathy for your onePERspective.Kathy Smith:Thanks, Anna. Here's another enlightening episode for anyone interested in engaging in patient oriented research. In my last personally speaking, I asked our listeners to consider dreaming big for a pan-Canadian network of networks. Et voila!! Voici! Here it is! SPOR has already got that started. SPOR? SPOR is the Strategy for Patient-Oriented Research. Members Yvonne and Annie enthusiastically enlightened us about the potential of SPOR's National Network of Networks they call the National Training Entity (NTE). Yvonne and Annie tell us NTE aims to build capacity by gathering all POR and PER lessons learned to create training courses and mentoring activities that help make connections to empower patients and researchers alike. Training and mentoring tools are to be developed for managers and funders as well. How? They describe NTE as building “little bridges” (or “passerelles” en francais) that can perform as connectors, catalysts, and facilitators to build PER4POR capacity. PER — patients engaged in research — for POR — patient oriented research. The network of networks can be used by patients wishing to engage in research (known as PEiRs). Researchers wishing to know more about patient-oriented research or to find PEiRs to help in their research can gain access through the passerelles as well. NTE's mandate is to connect its user to the right training in the right context for the right person in the right setting, at the right time. Moreover, NTE's passerelles facilitate connections. The NTE aims to short circuit connecting the right research engagement need to the right PEiRs to fill the need. I'm hoping that all these national capacity building connections, these passerelles (I like that word a lot) will help to transform the traditional research landscape into a much warmer, safe space, an equitable patient engaged in research environment that facilitates PER 4 POR: Patients Engaged in Research for Patient-Oriented Research. Key messagesFor me, the three key messages gleaned from Yvonne and Annie's SPOR-NTE presentation are: Know yourself and be clear in articulating what you can contribute to the research. Shakespeare told us centuries ago: “To thine own self be true.” Bring your authentic self when partnering in research. Academic knowledge is always enriched and enlightened when the research is grounded and relevant and bridged with the authenticity of real world experiences. Interdisciplinary collaboration: More and more and more in the 21st century, we're going to see this as the norm for conducting research. We can all benefit from training to join forces and to engage collaboratively in patient-oriented research. Critical thinking skills and creativity are not the exclusive realm of the academic experts. Amalgamating lived experience expertise into the PER4POR research landscape will move us beyond the traditional ways of thinking about and conducting research in separate silos. Patients, researchers, clinicians and policymakers can build capacity and research with, by, and for patient partners with access to this powerful pan-Canadian SPOR NTE support. Personally speaking, points to ponder Yvonne and Annie, like all the other podcasters before, have told us how to successfully interact. Bring your authentic self. Be open minded. Keep calm and steady and results-focused. Attitude is everything. Attitude, not aptitude, determines altitude. Interdisciplinary, interprofessional and inclusive research is becoming the modus operandi for the 21st century. Are we able to build equitable partnerships or do we need some extra training? Building relationships seems to be the secret sauce for successful patient engagement in research. Will the NTE be able to equip the different stakeholders with effective collaborative communication skills? As of today, SPOR's ambitious pan-Canadian Network of Networks National Training Entity is just a repository of PER4POR resources and tools. I dream of growing the training entity to include POR navigators charged with managing all PER4POR activities. A navigator passerelle will be of an enormous bridging benefit to all POR stakeholders. What is needed next for NTE to hire navigators to train, to connect, and to mentor patient partners engaged in research and the researchers wanting to engage them? How can we encourage research, public, and private funders to financially support a navigator agency? How can we show them this agency would decrease time and increase the efficiency for researchers burdened with these added PER4POR tasks right now?Anna:Thanks so much Kathy! You always manage to distill episodes so nicely. I know that a major component of engagement is interpersonal connection, but I wonder if there's some role for artificial intelligence to help make your navigator idea a large scale reality? Otherwise, or maybe in tandem, I think that a peer-to-peer individual or group buddy system could also help make your idea a sustainable one. Lots to think about, which is one of the many reasons I love your segment. Thanks so much for inspiring it and always making time for it.I'll be back in 2 weeks, so on April 22, with season 2 episode 6 of asPERusual. On it I will be talking with Tracy McQuire and Linxi Mytkolli from Diabetes Action Canada, a SPOR network focused on bringing patients, their caregivers, and researchers together to identify the health concerns of those living with diabetes and to co-create research projects that address these concerns. If you're looking for something to keep your patient engagement in research juices flowing until then, I've got just the thing for you. Our friends and colleagues at the Patient Advisors Network have just released a report titled, Reimagining the Research Landscape. In this report, they offer insights from 262 patient and caregiver partners about how CIHR/SPOR can foster and provide support at all levels to better support patients and caregivers in partnering in research. When you're really inspired after reading this report, consider checking out a study by my colleagues and I that applied a participatory process to investigate future directions for Canadian patient engagement in research. Its titled “Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers” and free to everyone to read in a journal called BMC Health Research Policy and Systems.Until next time, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you're there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Fitness titan, trailblazer, and icon Kathy Smith (who is also Matt's former boss) joins Matt for a very special 1-on-1 conversation on aging, mindfulness, her multi-step morning routine, the latest groundbreaking research on exercise, her legendary career, and SO much more. Don't miss this intimate chat on all things wellness with a true media maverick. Learn more about Ms. Kathy at www.kathysmith.com.

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode focused on the SPOR Chronic Pain Network. She also leaves you with "points to ponder," including her vision for the future of Canadian patient engagement in research based on her personal experiences and all we've heard in Season 2 to date. Whether you haven't yet listened to last week's episode, or you have and are interested in hearing someone else's take on it, this short (~10 minute) segment is for you! As a heads up -- the episode opens with a notice about the "Health Data for All of Us: Earning Trust Through Transparency" public forum that is being put on by Health Data Research Network Canada on April 23rd, 2024. Keep listening for more details about this free and exciting hybrid event.Episode Transcript:Anna:Hi everyone! Welcome back to onePERspective – a triweekly segment focused on hearing a patient partner's recap and reflections on the previous week's episode of asPERusual - a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. In less than two minutes, I will hand things over to Kathy Smith, a patient partner from Thunder Bay. Kathy is once again set to offer her onePERspective on last week's episode of asPERusual focused on the Strategy for Patient-Oriented Research Chronic Pain Network. All of the views expressed are her own.Now before I hand things over to Kathy, I would like to briefly bring your attention to a public form that is being put on by Health Data Research Network Canada on April 23, 2024 in Montreal Canada. The forum's title is Health Data for All of Us - Earning Trust Through Transparency. If you are interested in joining academic researchers, community groups, members of the public, industry leaders, and policymakers in timely and thought-provoking discussions about the issues of trust and transparency in the use of health data in Canada, this forum is for you! This day-long event is open to the public, and a hybrid event, meaning that you can attend virtually or in-person. You should note however that there is a charge of $10 if you would like to attend in person and are a member of the public, a community group or student; the tickets go up in price dependent on whether you are a researcher or from the public or private sectors. The stellar lineup of speakers includes health data researchers, data equity advocates and patient partners committed to building trust among the public in the access, use and sharing of health data. There is a limited amount of available tickets so be sure to snag yours - we've posted a link to the event on our Substack or you can always Google, Health Data for All of Us - Earning Trust Through Transparency public forum. I'll be checking out the event virtually so hopefully I will see you there!Alright, now over to you Kathy. Please take it away with your onePERspective.Kathy Smith:Thank you, Anna, for all the hard work you've done to show us a variety of platforms for engaging patients in research. Readers can see common threads developing throughout each of them, but they are in for something new with the CPN's platform. That's the Chronic Pain Network. Other chronic diseases like arthritis, cancer, heart and stroke, or diabetes engage with long standing, recognized medical disciplines with well entrenched power imbalances that are undergoing adjustments in attitude and in collaborative strategies to accommodate patients as partners. The Chronic Pain Network, made up of a multi-stakeholder group, including patient partners, were the original ones who lobbied the College of Physicians and Surgeons to recognize pain as a brand new standalone, certified medical discipline. So lived experience partners and the medical and clinical experts worked in tandem right from the get go in this brand new field of medicine. They started out as equal shareholders developing this new discipline. One group did not have dominance over the other. Their network did not have to write a power imbalance so they could move forward smoothly and quickly. Together they will be evolving the pain discipline traditions while they also grow their already strong strategies for research and supports for patient engagement.It is significant to note that Norman, a medical member of the Chronic Pain Network, considered listening skills to be of utmost importance for building a respectful, collaborative relationship. The Lived Experience member Delane concurred. Listen carefully because much can be learned when you engage open minded. Is open mindedness then, the secret sauce to relationship building? Delaine suggested — attitude is everything.Attitude, not aptitude, determines altitude.As you have heard in every asPERusual podcast to date, building a strong relationship is the foundation for successful engagement, and it takes a patience of time and a whole lot of money to do it right. CIHR (Canadian Institute for Health Research) was their long time financial backer as they formed and set out their vision and values. They've even branched off a pediatric pain subnetwork for their special needs and interests. Time and money help this diverse group of stakeholders create high functioning committees that have worked to educate all future health care professionals. Norman suggested that researchers, as well as patients, could access their shared body of knowledge through the hub to connect, contribute, collaborate, and learn more about chronic pain etiology and treatments. Access is set up through the Canadian Pain Network's website. It's really nice to see such cooperation and collaboration and equality in the relationship. Research studies for patients led by patients are also now in the works in this brand new co-created field of medical discipline. Well done all.PERsonally Speaking – Points to PonderThis time it's just one. There is a current ad on TV enticing potential lottery winners to dream big and then to dream bigger. Is patient engagement in research ready to do that too?I dream of an epicenter — a national umbrella for all visions and missions from all of these great platforms for engaging patients in research. AsPERusual is highlighting excellent patient engaged in research plans with common strategies and some uniquely suited to their focus group. Ones like the Canadian Cancer Society supporting patient-oriented research, EMPaCT, and the Canadian Pain Network, with more groups yet to come.But if research during the pandemic taught us anything, it was that the sum is greater than any of its parts. We saw research moved further and faster when it was handled on a collective, large scale, under a global umbrella, and not in individual silos. NATO was a very effective good example of a sole source funding agency and a network of networks facilitating military research around the world. They teamed up, they divided the tasks, they subtracted the duplications, and they multiplied their successes, strategizing for pandemic prevention and remediation.So can all our PER groups dream big? Can we collectively create a national epi-center for all things related to engagement of patients and research? A one stop shop, a network of networks and epicenter that could be tasked to manage sole source funding for research projects involving patient engagement. A national database manager to match up the right research project requests with the right patients with lived experience. Education and training experts for both researchers and patients. Knowledge assimilation and mobilization of findings. I think this is a big gap in research. Sharing results with the general public. Perhaps my dream agency can handle that for them. Administrators for patient reimbursements using one universal tracking system. Nothing is more tedious, tiresome and stress producing for me at least than handling all of that reimbursement requirement for the different agencies I work for. Administrators to manage remuneration with defined tasks and set fees. So let's dream big.Anna:Thanks so much Kathy for offering your ONEperspective. I always enjoy listening to what stuck out to you the most about last week's episode. I am really glad that you brought up the important concept of power dynamics and the recurring message related to the importance of positive attitudes, openness, and working together in true partnership. I also really appreciate you sharing how all of season 2's episodes can be applied to creating a future vision for Canadian patient engagement in research, in much the same way as our study that inspired this podcast. I have no doubt that you have inspired others to dream big, in much the same way as you have.As we close this episode, I'd like to remind you, the listener, to please be sure to check out our website, asperusual.substack.com, to access our interactive episode transcripts and listen to previous episodes. If you have any questions or comments, please be sure to shoot me an email at anna.asperusual@gmail.com. In 2 weeks, I'll be back with Annie LeBlanc and Yvonne Pelling to shine a light on the Strategy for Patient-Oriented Research National Training Entity. Until then, lets try to bring an open and positive attitude to all that we do and keep up our efforts to make patient engagement the standard, or as per usual. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Do you ever get nervous or anxious? Sometimes the toughest thing to do, to overcome your fear, is to just take those first steps forward. Come Adventure With Me is the title track to my brand new album inspired by the 1977 Rankin & Bass film, The Hobbit. You can learn all about it today on Pub Songs & Stories #281 0:20 - Marc Gunn “Selkie's Life” from Come Adventure With Me Learn more about Selkie and Call of the Sea in show #234. 3:57 - WELCOME TO PUB SONGS & STORIES I am Marc Gunn. I'm a Sci F'Irish musician and podcaster living in Atlanta, Georgia. And I compost non-meat scraps. Come Adventure With Me comes out on March 4 If you're new to the show, please subscribe. You can do that PubSong.com or Just send me an email to follow@celtfather. New Poll: What are your favorite songs on Come Adventure With Me? Little River Video of “Wherever I May Roam” New Merch Bundle: CD, Album Pin, Poster and Songbook for $90 Folk on Foot Podcast 7:21 - UPCOMING SHOWS MAR 9: Senoia Beer Company, Senoia, GA @ 7-10 PM MAR 17: Wings Cafe & Tap House, Marietta, GA @ 3-7 PM MAR 23-24: Sherwood Forest Faire, Paige, TX MAR 28: Dragon Con Filk Music Concert w/Brobdingnagian Bards @ 8 PM MAR 30-31: Sherwood Forest Faire, Paige, TX Make sure you check the calendar on the Marc Gunn homepage to see the latest list of performances. 8:47 - Mànran "Crow Flies" from Ùrar 12:04 - JOIN THE CLUB The show is brought to you by my supporters on Patreon. If you enjoy this podcast or my music, please join the Club. You get something new every week. It could be bonus podcasts, downloadable songs, printed sheet music, blogs, or stories from the road. Plus, you'll get access to videos like my Coffee with The Celtfather video concerts. Email follow@celtfather ! If you can't support me financially, just sign up on Patreon for free. Thanks to my Kickstarter supporters: An extra HUGE thanks to Rich & Leslie Maynard, Carol Baril, Emily "dragondoodle" Gaskill, Larry & Sarah-Beth Cook, Les Howard, Sunshine & Navigator Burke, Janine Rinker, Zan Rosin, Vicki Solomon, Thomas Browne, Kris Dobie, CrimsonDraggen, Jason Denen, Kathy Smith, Dell Christy, DW, Tammy Glover, Angela Hughes, Ben Doran, Thul Family, Crab Donkey, Glen Bartram, Rumbly Porter, Carol "Crazy Cat Lady" Donahue, Mike and Sam Cavanaugh, Jan & Jim Czenkusch, Tony & Enzo Lamanna, Jennifer Crispin, Mark Peters, Wendy Erisman, Rie Sheridan Rose, Tracy O'Shea, Kathleen Sloan, Lawrence Lang, James O'Dell, LeighAnn Mott, Kelley Durski. Thank you! 14:04 - THE STORY OF COME ADVENTURE WITH ME 1977 Rankin & Bass film, The Hobbit from In The ‘Verse podcast #2.2 Features Sam Gillogly on violin and Rich Brotherton on guitar The original story behind “Come Adventure With Me” was published on Patreon. First saw The Hobbit in 6th after moving to Texas from Maryland. Inspired my Love of Dungeons & Dragons Story of transformation and overcoming fear. 70's songwriter feel with the minor chord change. Come Adventure With Me Lyrics and music Marc Gunn There's a secret door to a hall unknown Inside are fears that Turn me to stone Do I step forward Or head back home Which is the path for me I raise my head and Take one step more The ground it shakes. I look back to the door Feel like I'm caught and stuck to the floor And so I cut myself free * This world's a treasure that is full of strife Every moment can enrich your life Just face your dragons with the edge of a knife It's a better life you see Come adventure with me. There are ugly goblins doing scary things Deep down in dungeons there are magic rings Live or die with the riddles we bring You'll find your way through the dark My Precious life Has so many memories Fluttering birds, butterflies in trees My home is comfort, comfort is a breeze But there's another way to live So many wars. It's an endless fight To slay our dragons that soar through our night But I'm no coward. I'll do what is right. Before I make my way home. Now I'm back with stories that ring A truth That soars up on eagle wings Let's not forget the songs elves sing Oh the joy that they bring! 25:25 - Marc Gunn “Come Adventure With Me” from Come Adventure With Me 29:54 - CLOSING Thanks for listening to Pub Songs & Stories. This episode was edited by Mitchell Petersen. You can follow and listen to the show on my Patreon or wherever you find podcasts. Sign up to my mailing list to learn more about songs featured in this podcast and discover where I'm performing. Remember. Reduce, reuse, recycle, and think about how you can make a positive impact on your environment. Have fun and sing along at www.pubsong.com! #pubstories #adventurepodcast #thehobbit  

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith provides a short recap and her key takeaways from last week's episode describing the SPOR Evidence Alliance. Whether you haven't yet listened to last week's episode, or you have and are interested in hearing someone else's take on it, this short (

In this feature segment of asPERusual, guest listener and patient partner Kathy Smith provides a short recap and her key takeaways from last week's episode exploring EMPaCT's meaningful and purposeful approach to equity, diversity, and inclusion in patient engagement in research. Whether you haven't yet listened to last week's episode, or you have and are interested in hearing someone else's take on it, this short (

1.24.23 // Kathy Smith

The holiday season provides me with an opportunity to indulge in what's become a RealTalk MS tradition. I reserve the last two episodes of the year to revisit the most compelling,and important conversations that I've had over the past year. This week, I'm revisiting the conversations I had at the Pathways To Cures Global Summit that took place in New York last May.  The National MS Society brought together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years. I had the opportunity to speak with several of the top MS experts in the world at this meeting and, collectively, these are the conversations that have resonated with me all year long. We have a lot to talk about! Are you ready for RealTalk MS??! Happy Holidays!  :22 This Week: Revisiting the Pathways to Cures Global Summit  :54 My conversation with a distinguished group of CEOs representing 5 major MS Societies   2:55 Dr. Tim Coetzee discusses the current state of MS care and the work ahead  9:11 Kathy Smith shares her perspective on the Pathways to Cures Global Summit  13:54 Dr. Anne-Katrin Probstel talks about stopping MS  20:26 Dr. Naila Makhami discusses detecting MS early  31:36 Dr. Daniel Ontaneda suggests how people living with MS should be thinking about the Pathways to Cures global research initiative  35:53 Dr. Mitzi Joi Williams discusses the importance of ensuring that the Pathways to Cures initiative doesn't leave anyone behind  41:11 Share this episode  47:21 Have you downloaded the free RealTalk MS app?  47:42 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/329 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Learn more about Pathways To Cures https://www.nationalmssociety.org/pathways-to-cures Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 329 Guests: Cyndi Zagieboylo, Nick Moberly, Klaus Hom, Rohan Greenland, Dr. Pamela Valentine, Dr. Tim Coetzee, Kathy Smith, Dr. Anna-Katrin Probstel, Dr. Naila Makhami, Dr. Daniel Ontaneda, Dr. Mitzi Joi Williams Privacy Policy

Get your ticket to Awaken Your Dream Life Virtual in January 2024! http://jjflizanes.com/dreamlife   Miss the masterclass What Blocks Your Brilliance?  Watch it here http://jjflizanes.com/brilliance   Get 30% OFF the Starter Pack of High Vibrational Wines http://highvibrationalwines.com   use code HOLIDAY 30   Jeanne has a passion to help empower her clients to eat well and enjoy an active, healthy life at any age. She has followed a career path that has earned her recognition as an expert in food, nutrition and healthy aging. She received her B.S. Degree in Clinical Nutrition from the State University of New York at Buffalo in 1979. Over the past 35 years, she has provided nutrition services for a broad range of clients including Pritikin Systems Inc., Kathy Smith, the LA Kings, Mattel Corp., Unocal, Chez Melange Inc. and Richard Simmons, where she helped launch his successful Deal- A-Meal program in 70 + healthclubs across the country. Jeanne was named California Recognized Young Dietitian of the Year in 1990 and is the co-founder of the Nourishing Wellness Medical Center with Doc Allen, her husband of 34 years. She offers personalized nutrition coaching, whole foods cooking classes & Healthy Aging seminars geared towards women and men who want to be nourished by the “fountain of youth.” http://nourishingwellness.com Connect with Jeanne ASAP  jp@nourishingwellness.com   JJ Flizanes is an Empowerment Strategist and the host of several podcasts including People's Choice Awards nominee Spirit, Purpose & Energy. She is the Director of Invisible Fitness, a best-selling author of Fit 2 Love: How to Get Physically, Emotionally, and Spiritually Fit to Attract the Love of Your Life and The Invisible Fitness Formula: 5 Secrets to Release Weight and End Body Shame. Named Best Personal Trainer in Los Angeles for 2007 by Elite Traveler Magazine, JJ has been featured in many national magazines, including Shape, Fitness, and Women's Health as well as appeared on NBC, CBS, Fox, the CW and KTLA. Learn more http://jjflizanes.com

Get your ticket to Awaken Your Dream Life Virtual in January 2024! http://jjflizanes.com/dreamlife   Miss the masterclass What Blocks Your Brilliance?  Watch it here http://jjflizanes.com/brilliance   Get 30% OFF the Starter Pack of High Vibrational Wines http://highvibrationalwines.com   use code HOLIDAY 30   Jeanne has a passion to help empower her clients to eat well and enjoy an active, healthy life at any age. She has followed a career path that has earned her recognition as an expert in food, nutrition and healthy aging. She received her B.S. Degree in Clinical Nutrition from the State University of New York at Buffalo in 1979. Over the past 35 years, she has provided nutrition services for a broad range of clients including Pritikin Systems Inc., Kathy Smith, the LA Kings, Mattel Corp., Unocal, Chez Melange Inc. and Richard Simmons, where she helped launch his successful Deal- A-Meal program in 70 + healthclubs across the country. Jeanne was named California Recognized Young Dietitian of the Year in 1990 and is the co-founder of the Nourishing Wellness Medical Center with Doc Allen, her husband of 34 years. She offers personalized nutrition coaching, whole foods cooking classes & Healthy Aging seminars geared towards women and men who want to be nourished by the “fountain of youth.” http://nourishingwellness.com Connect with Jeanne ASAP  jp@nourishingwellness.com   JJ Flizanes is an Empowerment Strategist and the host of several podcasts including People's Choice Awards nominee Spirit, Purpose & Energy. She is the Director of Invisible Fitness, a best-selling author of Fit 2 Love: How to Get Physically, Emotionally, and Spiritually Fit to Attract the Love of Your Life and The Invisible Fitness Formula: 5 Secrets to Release Weight and End Body Shame. Named Best Personal Trainer in Los Angeles for 2007 by Elite Traveler Magazine, JJ has been featured in many national magazines, including Shape, Fitness, and Women's Health as well as appeared on NBC, CBS, Fox, the CW and KTLA. Learn more http://jjflizanes.com

Get your ticket to Awaken Your Dream Life Virtual in January 2024! http://jjflizanes.com/dreamlife   Miss the masterclass What Blocks Your Brilliance?  Watch it here http://jjflizanes.com/brilliance   Get 30% OFF the Starter Pack of High Vibrational Wines http://highvibrationalwines.com   use code HOLIDAY 30   Jeanne has a passion to help empower her clients to eat well and enjoy an active, healthy life at any age. She has followed a career path that has earned her recognition as an expert in food, nutrition and healthy aging. She received her B.S. Degree in Clinical Nutrition from the State University of New York at Buffalo in 1979. Over the past 35 years, she has provided nutrition services for a broad range of clients including Pritikin Systems Inc., Kathy Smith, the LA Kings, Mattel Corp., Unocal, Chez Melange Inc. and Richard Simmons, where she helped launch his successful Deal- A-Meal program in 70 + healthclubs across the country. Jeanne was named California Recognized Young Dietitian of the Year in 1990 and is the co-founder of the Nourishing Wellness Medical Center with Doc Allen, her husband of 34 years. She offers personalized nutrition coaching, whole foods cooking classes & Healthy Aging seminars geared towards women and men who want to be nourished by the “fountain of youth.” http://nourishingwellness.com Connect with Jeanne ASAP  jp@nourishingwellness.com   JJ Flizanes is an Empowerment Strategist and the host of several podcasts including People's Choice Awards nominee Spirit, Purpose & Energy. She is the Director of Invisible Fitness, a best-selling author of Fit 2 Love: How to Get Physically, Emotionally, and Spiritually Fit to Attract the Love of Your Life and The Invisible Fitness Formula: 5 Secrets to Release Weight and End Body Shame. Named Best Personal Trainer in Los Angeles for 2007 by Elite Traveler Magazine, JJ has been featured in many national magazines, including Shape, Fitness, and Women's Health as well as appeared on NBC, CBS, Fox, the CW and KTLA. Learn more http://jjflizanes.com

Get your ticket to Awaken Your Dream Life Virtual in January 2024! http://jjflizanes.com/dreamlife   Miss the masterclass What Blocks Your Brilliance?  Watch it here http://jjflizanes.com/brilliance   Get 30% OFF the Starter Pack of High Vibrational Wines http://highvibrationalwines.com   use code HOLIDAY 30   Jeanne has a passion to help empower her clients to eat well and enjoy an active, healthy life at any age. She has followed a career path that has earned her recognition as an expert in food, nutrition and healthy aging. She received her B.S. Degree in Clinical Nutrition from the State University of New York at Buffalo in 1979. Over the past 35 years, she has provided nutrition services for a broad range of clients including Pritikin Systems Inc., Kathy Smith, the LA Kings, Mattel Corp., Unocal, Chez Melange Inc. and Richard Simmons, where she helped launch his successful Deal- A-Meal program in 70 + healthclubs across the country. Jeanne was named California Recognized Young Dietitian of the Year in 1990 and is the co-founder of the Nourishing Wellness Medical Center with Doc Allen, her husband of 34 years. She offers personalized nutrition coaching, whole foods cooking classes & Healthy Aging seminars geared towards women and men who want to be nourished by the “fountain of youth.” http://nourishingwellness.com Connect with Jeanne ASAP  jp@nourishingwellness.com   JJ Flizanes is an Empowerment Strategist and the host of several podcasts including People's Choice Awards nominee Spirit, Purpose & Energy. She is the Director of Invisible Fitness, a best-selling author of Fit 2 Love: How to Get Physically, Emotionally, and Spiritually Fit to Attract the Love of Your Life and The Invisible Fitness Formula: 5 Secrets to Release Weight and End Body Shame. Named Best Personal Trainer in Los Angeles for 2007 by Elite Traveler Magazine, JJ has been featured in many national magazines, including Shape, Fitness, and Women's Health as well as appeared on NBC, CBS, Fox, the CW and KTLA. Learn more http://jjflizanes.com

Get your ticket to Awaken Your Dream Life Virtual in January 2024! http://jjflizanes.com/dreamlife   Miss the masterclass What Blocks Your Brilliance?  Watch it here http://jjflizanes.com/brilliance   Get 30% OFF the Starter Pack of High Vibrational Wines http://highvibrationalwines.com   use code HOLIDAY 30   Jeanne has a passion to help empower her clients to eat well and enjoy an active, healthy life at any age. She has followed a career path that has earned her recognition as an expert in food, nutrition and healthy aging. She received her B.S. Degree in Clinical Nutrition from the State University of New York at Buffalo in 1979. Over the past 35 years, she has provided nutrition services for a broad range of clients including Pritikin Systems Inc., Kathy Smith, the LA Kings, Mattel Corp., Unocal, Chez Melange Inc. and Richard Simmons, where she helped launch his successful Deal- A-Meal program in 70 + healthclubs across the country. Jeanne was named California Recognized Young Dietitian of the Year in 1990 and is the co-founder of the Nourishing Wellness Medical Center with Doc Allen, her husband of 34 years. She offers personalized nutrition coaching, whole foods cooking classes & Healthy Aging seminars geared towards women and men who want to be nourished by the “fountain of youth.” http://nourishingwellness.com Connect with Jeanne ASAP  jp@nourishingwellness.com   JJ Flizanes is an Empowerment Strategist and the host of several podcasts including People's Choice Awards nominee Spirit, Purpose & Energy. She is the Director of Invisible Fitness, a best-selling author of Fit 2 Love: How to Get Physically, Emotionally, and Spiritually Fit to Attract the Love of Your Life and The Invisible Fitness Formula: 5 Secrets to Release Weight and End Body Shame. Named Best Personal Trainer in Los Angeles for 2007 by Elite Traveler Magazine, JJ has been featured in many national magazines, including Shape, Fitness, and Women's Health as well as appeared on NBC, CBS, Fox, the CW and KTLA. Learn more http://jjflizanes.com

Bras Across the Causeway is a charity run organized by Kathy Smith. The event was inspired by a conversation she had with radio host Matt McCoy in 2016 about finding a way to give back to the community and support breast cancer patients. They came up with the idea of a 5k run with a unique twist: stringing bras across the causeway. They started collecting donated bras and have amassed thousands of them, which they string up during the event to raise awareness for their cause.The money raised from the race entry fees goes into an account to support breast cancer patients' needs, such as gas, groceries, housing, clothing, daycare, and even covering copays and special medical tests. The funds are managed by the Providence Foundation, which works closely with patients to understand their unique needs.The race day is a lively and heartwarming event, featuring a survivor tent, a survivor walk, a 5k run, a one-mile run, and various vendors, including Cammie's Old Dutch ice cream and Hall's sausage. The event is a celebration of community support and a testament to the power of people coming together to help those affected by breast cancer. It's grown in popularity over the years and continues to positively impact the local community. Kathy SmithRaces MentionedBras Across the CausewayBoo Krewe 2The Hot Trot at LuLu'sShout OutsMatt McCoyJim BroganLone Palm Parrot Head SocietyParrot Heads in Paradise Meeting of the MindsProvidence FoundationKeely WallJosh FosterCarrieCourtneyPanini Pete FoundationPete BlohmeJody BlohmeNick DiMarioSupport the showFor more details on Run Your Story happenings, including signing up for our upcoming training program, visit https://runyourstory.com/For web development, coding tutoring, or tech services, visit https://gaillardts.com/Go Run Your Story and take a piece of this story with you! Follow us on Facebook and Instagram for the latest news on upcoming episodes. Support me on Patreon!Can't wait to hear Your Run Story!! Thank you to all of our Patreon supporters!Kristen RatherSteve TaylorMary TrufantSuzanne CristSuzanne ClarkAnna SzymanskiDave McDonaldKarla McInnisKellie LandrumJenni ZimlichJames ContrattoJordan DuBoseCristy EvansSharonda ShulaNell Gustavson

Join us for our conversation with Leadership Springfield's six outgoing board members, Mandy Anthes, Monica Horton, Krista Shurtz, Kathy Smith, Larry Stock, and Tony Vienhage. Tune in as we talk about their experience on the LeadSGF board and what board service means to them. Special thanks to Mercy Hospital Springfield for sponsoring the Leadership Springfield "Plugged In" episodes.

This past week, the National MS Society hosted the Pathways To Cures Global Summit, bringing together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years.  In Part 1 of our coverage, we're taking you inside this historic meeting, where you'll hear from some of the top MS experts in the world who participated in this remarkable event. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The Pathways To Cures Global Summit  :22 My conversation with a distinguished group of CEOs representing 5 major MS Societies   3:04 Tim Coetzee discusses the current state of MS care and the work ahead  9:20 Kathy Smith offers her perspective on the Pathways To Cures Global Summit  14:32 Dr. Anne-Katrin Probstel talks about stopping MS  22:52 Dr. Naila Makhani discusses detecting MS early  33:54 Share this episode  39:17 Please remember to take our listener survey!  39:38 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/297 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Take the RealTalk MS Listener Survey  https://realtalkms.com/survey RealTalk MS Episode 125: From the Pathways To Cures Think Tank  https://realtalkms.com/125 RealTalk MS Episode 238: The Pathways To Cures Research Roadmap  https://realtalkms.com/238 Pathways To Cures https://nationalmssociety.org/pathways-to-cures Take the RealTalk MS Listener Survey  https://realtalkms.com/survey Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 297 Guests: Cyndi Zagieboylo, Dr. Pam Valentine, Prof. Des Graham, Nick Moberly, Klaus Holm, Tim Coetzee, Kathy Smith, Dr. Anne-Katrin Probstel, and Dr. Naila Makhani Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Hello and thank you for joining us on this week's podcast! This week we have a special treat as we get to share our first interview featuring pioneering fitness expert Tamilee Webb of the popular “Buns Of Steel” exercise series! In addition to her extensive video series which rose to popularity in the 80's, 90's and 2000's, Tamilee is also an author and has achieved many accolades in the fitness industry as described in her bio: “Tamilee has been the recipient of numerous other awards for outstanding achievement in the field of personal fitness, including Best Exercise Video and Best Training Organization 1987, conferred by IDEA, has been honored by California State University, Chico, Outstanding Alumni of 1990 and 1996. Inducted in the FITNESS HALL OF FAME in 2008.  Tamilee shares this honor with fellow fitness celebrities as Kathy Smith, Gilad Janklowicz, Jack Lalanne, and Jane Fonda to name a few. Tamilee has been a co-host on the Health Network Channel's aerobic fitness shows now known as Discoveries “Fit TV”. The network services more than 50 million households, and its audience continues to multiply. She has also hosted ESPN's Fitness Pro Series and consulted on Fox Sports Fitness show ‘Body Squad'.” We are big fans of Tamilee and her journey to help spread the importance of physical activity, health and wellness has inspired our journey as well. In addition to this podcast, please be sure to visit her website and her “Webb Workouts” website where she offers workouts on demand, nutrition bonuses, community access and access to LIVE workouts! In This Podcast You Will Learn: 1). How Tamilee was first inspired in fitness in the beginning and how she got started in the fitness industry in general. 2). How she was able to become a trusted name and expert in fitness through her work at the “The Golden Door Resort” in CA , her many cruise ships tours as an instructor and training a fast growing instructor clientele internationally. 3). Her story on how she was asked to be the official trainer/course creator for the “Buns Of Steel” video series that rose to popularity making her a household name in the fitness industry. 4). Some of her thoughts on the technology of the fitness industry today and how it has changed from the VHS, DVD distribution channels of the past to the internet. 5). Her thoughts on her own journey which she continues through her current projects and businesses and her appreciation when meeting people who say that she has been an inspiration to them. /// We want to send a big THANK YOU to Tamilee for taking the time to join us for this interview! Getting the chance to hear her stories and learn from the knowledge she has gained in the ever-changing fitness industry has been priceless. Her drive in health and fitness shows not just through her achievements but also in her genuine personality and her passion to help to spread the importance of staying healthy through exercise is truly innate. We hope you agree after listening to this special episode. Thank You Tamilee! Team MeredithSee omnystudio.com/listener for privacy information.

About the Episode: Join us as we launch a series on grief. Kathy Smith joins us to share her journey through losing a son, Hunter, at age 29, and two years later, her husband, Clay. In this episode, we walk with her in the exhaustion and layers of grief, the community that came alongside her in the wake of loss, and the Lord's provision of peace in healing. Time can heal but the passage of time is also hard. If you are struggling with grief or the pain of loss, please don't hesitate to reach out to deeplight@pcpc.org or 214-224-2500. About Our Guest: Kathy was born and raised in Ft. Worth, graduated from UT, and moved to Dallas. She was married to Clay for almost 36 years. They have two wonderful daughters and sons-in-law, four precious grandchildren, and one son in heaven. Kathy is a charter member of PCPC. She has participated in Wednesday Weekly Bible study, A Mother's Heart, and has been involved with Thursday Morning Bible Study for many years. She volunteers in the nursery once a month. Kathy enjoys walking, gardening, being outside in nature, and playing almost any game. Hunter Smith's obituary: https://obits.dallasnews.com/us/obituaries/dallasmorningnews/name/hunter-smith-obituary?id=17961346 Clay Smith's obituary: https://obits.dallasnews.com/us/obituaries/dallasmorningnews/name/warren-smith-obituary?id=1644426 About Our Host: A graduate of Covenant Theological Seminary in St. Louis, Mark Davis came to PCPC as our Youth Pastor in 2003 and became our Senior Pastor in 2009. He and his bride, Kristina, met at a Young Life Camp in 1988 and have five amazing kids, Kara (and husband, Drew), Madalyn (and husband, Jack), Cayden, Esther Kate, & Samuel. Resources: Grief Share Ministry: Grief Share is a friendly, caring group of people who will walk alongside you through one of life's most difficult experiences. You don't have to go through the grieving process alone. https://www.griefshare.org/ Email us at DeepLight@pcpc.org or Call 214-224-2500 (music license ASLC-14EAD3E0-84F34F4276)

New year, new you! It's the 1st episode of 2023 and it's time to get physical. Join Lyndsey Parker (Yahoo Music Entertainment Editor) and first "trainer to the stars," fitness icon and creator of Body by Jake, Jake Steinfeld, on a mental workout as they discuss how Steinfeld made physical fitness an occupation, his album Don't Quit! (first original soundtrack to an exercise video) and the fitness trends of the 1980's.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

"In God We Trust" James 1:9-11, 5:1-6

Today on the Women's Doctor, Kathy Smith joins us to discuss how to boost vitality in your later years. Kathy has been a fitness icon since the 1980's and continues to inspire women to strive for progress not perfection. In this episode, she brings you the best strategies to stay consistent in your new year's resolutions. She believes that consistency in the process will always supersede the results.   Resolutions often fail because we are taught to rework our entire life around a singular goal. Incremental changes centered around fun, community and feeling great will not only be easier to stay consistent in but will also naturally create a healthier body. Instead of focusing on the physical look, seek out activity that energizes you!    As we age, human growth hormones begin to decline, unfortunately reducing muscle mass in the body. For women entering into perimenopause, weight training becomes increasingly integral to the vitality of your body. Your body is the vessel that will enable you to do what you love until the end of your life. Simple daily changes are the key to unlocking stamina, joy and reversing the effects of a sedentary lifestyle. Make 2023 the best year of your life! Start small and find movement that makes you feel amazing!   Takeaways: [4:00] Reframe your new year's resolution by detaching from the results and embracing process [7:00] By focusing on one change at a time, you can stick to your resolutions longer [9:30] The health and habits of your immediate community heavily dictates your own health  [13:30] Your morning habits, especially in winter, will help you conquer the rest of the day! [18:00] Being consistent in your resolution, even if you only have 7 minutes to work out that day [19:00] Focusing on habits that make your body feel great, you will naturally become healthier  [21:00] Your body needs care because it is the vessel that will take you through your whole life [25:30] Fasting is a great way to break bad habits but you need to build back better habits after [28:00] As you age, exercise impacts your human growth hormones which affects your muscles [29:50] High intensity weight lifting affects your hormonal profile and promotes vitality [31:20] Dead Butt Syndrome is caused by a sedentary lifestyle shortening the hip flexors [35:30] Give yourself a 10 minute snack of exercise throughout the day is so powerful [39:00] Finding an exercise routine that matches an animal that you energetically relate to    Mentioned in This Episode: https://www.kathysmith.com/ https://www.instagram.com/kathysmithfitness/ https://www.facebook.com/therealkathysmith   Twitter: “It's just a reminder that you're not skipping days! This is your life. You're doing this for yourself. You're doing this because 2023 is going to be the best year!”  [18:12]   “The reason why you lift, not just a 3 pound weight, but a heavier weight, maybe twice a week is because of what it does on the cellular level to your mitochondria.” [29:50]   “How do we get the shoulders back above the hips and how do we get our butt engaged and that's all called the posterior chain.” [34:20]   “If you do have to sit, at least once an hour stand up and do a 2-3 minute power push where you do some squats, squat pop ups and knees up.”   “Doing an exercise thing in the morning and then sitting for the rest of the day basically negates most of  the benefits of that workout.” [35:55]     Podcast Disclaimer:  https://resources.thespadr.com/the-womans-doctor/#disclaimer

For Public Defenders who serve in coastal areas, the story on toady's show will be all too familiar. As Hurricane Ian barrelled toward the Florida coast, a state of emergency was declared and evacuation plans started to come together, but as is almost always the case, no one thought of those incarcerated.   Today, Hunter spoke with Kathy Smith, Chief Public Defender in the 20th Judicial District of Florida, to discuss the impacts of the storm on those left in jail. Dating as far back as memory allows, state's failed their obligations to protect the lives of people both in and out of jail when natural disasters strike, and Hurricane Ian was no exception. For days, people, many of whom were in jail simply because they could not afford to pay bail, lived with raw sewage and without clean drinking water.   Luckily, no one died from the state's neglect, but this episode serves as a powerful warning and reminder for those with a duty to protect people's lives: when a natural disaster strikes, remember the people who cannot evacuate and think of a way to keep them alive.     Guest: Kathy Smith, Chief Public Defender, 20th Judicial District, Florida Key Takeaways: How Kathy got into this work [6:50] Historical response to natural disasters in the 20th District [10:50] The response to Hurricane Ian in the 20th District [12:34] Who was in the Ft Meyer's jail and what conditions did they face [18:27] Why pre-trial release is so important [24:42] Impacts and the way forward after Ian [26:41] Does Florida care about the Constitution or just the part it likes? [31:00] Changes for the Future [34:43] People arrested during the storm [38:00] Advice to other Public Defenders [41:20] Resources: USA Today Coverage of those left behind after Ian More Coverage on Ian Miami New Times Coverage   People left in prison during: Hurricane Katrina Hurricane Harvey Hurricane Michael Hurricane Sandy Hurricane Ike, Maria, Matthew, Irene etc.   Contact Hunter Parnell:   hwparnell@publicdefenseless.com   Instagram   Twitter   www.publicdefenseless.com

(Streamed live on Oct 9, 2022 ) https://fb.watch/g4sYaLHSgB/ YouTube: https://youtu.be/uwHy0NW9NiE   If you were blessed by this podcast, consider becoming a partner and support with a financial gift of $1 or more. Our Cash App tag is “$AWorthyWork”. Please put in the "For:" section, Podcast. If you would like to sponsor an episode of this podcast, please email us at chiefservantslittlelambs@gmail.com for more information.”   For More Messages Like This Please Join Us Every Sunday at 10am 4284 Shelby Rd Millington, TN 38053   (https://hfbcmillington.com)

You're not really free if you have to ask permission to do ANYTHING. We discuss this principle and more important topics of liberty with Kathy Smith, founder of The Loving Liberty Network.

Why aren't our kids being taught these important lessons about liberty around the world and what happens when there isn't any freedom? Tune in to hear these important conversations and more.

9.21.22 // Women's Study: Kathy Smith

Kathy Smith is a legend in the fitness and wellness industry, and she has influenced the lives of millions with her iconic exercise videos and bestselling books. Listen as Kathy explains the best types of exercise to help you strengthen your bones and prevent osteoporosis, as well as the effects of aging on your muscles and how burst training can help you maintain your explosive muscle fibers. Plus, find out the simple things you can do throughout your day that can make a big difference, including Kathy's top exercises to engage your core and improve your balance. With Kathy's tips, you're sure to have endless energy and stay strong and fit, no matter what your age! Get Kathy Smith's free Endless Energy Quiz

"Don't Fight the Site!". What does that mean? Well, let us tell you! Plus, we discuss some other important woodland management concepts, the havoc that invasive species have wrought, and the challenges of conservation outreach. All this and more in this month's episode.  LINKS!!! OSU's Woodland Stewards website: https://woodlandstewards.osu.edu/ YouTube video we discussed - "How we get tree planting wrong | It's Complicated" from the Guardian: https://www.youtube.com/watch?v=dhvOJrkhh8I Richland Soil & Water Conservation District: https://richlandswcd.net/ Kingwood Center Gardens: https://kingwoodcenter.org/ Music Run One Down - Dan Lebowitz Easy Stroll & Sunday - TrackTribe Permission was generously granted by the artists for the use of these tracks.

A message in Acts on living a life that serves God! Featuring an end of service prophetic word from Ms. Kathy Smith.Over the next several weeks, we will be going through the book of Acts and discussing the powerful links between the early church and how we are still called to do the work of Jesus today!To learn more or if you have any questions, you can email us at hello@pneuma.life.Join us live for church each Sunday at 10AM 4100 Race Track Rd. (Durbin Creek Elementary)Saint Johns, FL 32259 www.pneumalife.churchFacebook @HelloPneumaLife

The next aspect the women examine in their study, "Seeing Jesus in the Old Testament" is the patterns in the Old Testament that show Jesus on display, and point to Him in the New Testament!

YAY SYRUP! Today we welcome Kathy Smith, Forestry Program Director for The Ohio State University's School of Environment and Natural Resources. She has a wealth of knowledge about woodlands, and works with students at OSU's Mansfield campus researching maple syrup production. Not only does maple syrup production go well with pancakes (or French fries, Josh?), but effective woodland management! If you want to "tap" even further into this subject... Ohio Maple Producers Association: http://ohiomaple.org They serve all of Ohio's Maple Industry. They help you sell maple products while promoting the industry and Ohio's maple heritage Ohio State Maple blog: https://u.osu.edu/ohiomaple/ They offer upcoming educational events, updates about ongoing research projects and articles from cooperating entities National Resources on maple syrup: http://mapleresearch.org/ https://www.uvm.edu/cals/proctor-maple-research-center https://blogs.cornell.edu/cornellmaple/ https://www.themaplenews.com/ http://northamericanmaple.org/ http://www.internationalmaplesyrupinstitute.com/ http://mapletrader.com/community/ Links to Our Stuff! Richland SWCD: www.richlandswcd.net Kingwood Center Gardens: www.kingwoodcenter.org Music! Special thanks to both Dan Lebowitz and TrackTribe for granting permission to use their music for our podcast. Tracks used are listed here: Run One Down - Dan Lebowitz Smoke Jacket Blues - TrackTribe Easy Stroll - TrackTribe  

Have you heard the buzz about blood-flow restriction training? BFR is one of the newer training techniques to hit the rehab and sports performance worlds and is also being recognized as a potent training method for aging baby boomers. By restricting venous return of blood flow with safe, elastic B Strong Bands, the body is tricked into thinking it is working harder, which produces amazing physiological results. Today on the IDEAfit PRO SHOW, host Sandy Webster speaks with industry icon, Kathy Smith, a New York Times best-selling author, who has stood at the forefront of the fitness and health industries for 40 years and BFR guru, Dr. Jim Stray-Gundersen, who is spearheading efforts to make blood flow restriction training safe, effective and affordable for the general public. IDEA Health & Fitness Association is the world's leading organization of fitness and wellness professionals and has been for more than 39 years. We deliver world-class content and continuing education to fitness professionals, business owners and allied health professionals via our publications, including the award-winning Fitness Journal; our fitness, business and nutrition conferences; and hundreds of streaming videos and online courses available on ideafit.com. Additionally, with IDEA FitnessConnect, we host the largest national industry-wide directory, linking over 275,000 fitness professionals to more than 40 million consumers. Through IDEA professionals in over 80 countries, we Inspire the World to Fitness! Learn more about their presentation at IDEA World Virtual this summer. There's still time to take advantage of a complimentary 3-day ticket to IDEA World Virtual with an IDEAfit+ Membership. IDEA's new membership gives you access to unlimited CECs through online education courses, business tools like social media scheduling management, email marketing and more! Visit our website to learn more. Kathy Smith. Website: https://www.kathysmith.com, Podcast: The Art of Living Jim Stray-Gundersen. Website: https://bstrong.training/ The IDEAfit PRO SHOW is hosted by Sandy Todd Webster, Editor in Chief, IDEA Publications, ideafit.com; executive produced by Jordan Leeds; produced and engineered by Michael Hilding. Copyright 2021 by Outside Interactive, Inc.   

Join us as we talk all things “Buns,” with none other than Tamilee Webb, the force behind the highly successful “Buns of Steel” and “Abs of Steel” home fitness brand.  Her no hype and down to earth style enabled her to sell over 14 million units worldwide of her highly successful workout videos. Tamiliee takes us on a journey that helped pave the way for many others in a dynamic and expansive health and fitness industry.  With an approach of tackling both the emotional and physical bodies, Tamiliee set a standard that has led to best-selling books, a host position with ESPN's Fitness Pro series, and landed her in the Fitness Hall of Fame alongside household names such as, Jane Fonda, Kathy Smith, Jack LaLane and Arnold Schwartzenegger.  A one-time aspiring country western singer (yes...we get her to belt out in song), Tamilee gives us all useful guidance and tips to be our best selves.  Join us as she leads the “She's a 10” ladies in a bun burning exercise all listeners can all try at home. https://www.instagram.com/shesa10times5/

A preview of some of the great bonus content available to patrons of the show. Sign up for as little as $1 and help support the podcast. Support www.patreon.com/redmediapr

Manoomin, or wild rice, is central to Ojibwa history, culture, and prophecy. In this episode, Ojibwa wild rice harvesters and caretakers Courtney Calia and Kathy Smith share their knowledge of Manoomin's central role in Ojibwa society and its connection to the health of water, the planet, and people. Support us on Patreon: https://www.patreon.com/therednation