Podcasts about canadian organization

Dr. Liisa Galea is a scientific lead for the CAMH (the Centre for Addiction and Mental Health) program womenmind™. It's a community of philanthropists, thought leaders and scientists dedicated to tackling gender disparities in science, and to put the unique needs and experiences of women at the forefront of mental health research. womenmind: https://www.camh.ca/en/get-involved/join-the-cause/womenmind Women's Health Research Cluster: https://womenshealthresearchcluster.com/ Frontiers in Neuroendocrinology: https://www.sciencedirect.com/journal/frontiers-in-neuroendocrinology Organization for the Study of Sex Differences: https://www.ossdweb.org/ Canadian Organization for Gender and Sex Research: https://www.cogsresearch.ca/

Guest: Jessie Kaur, Vancouver Chapter Director of Shelter Movers Learn more about your ad choices. Visit megaphone.fm/adchoices

Greg Brady spoke with Dr. Ragini Sharma, President of COHHE, Canadian Organization for Hindu Heritage Education about the second day of clashes between Hindus and Khalistani protestors in Brampton. Learn more about your ad choices. Visit megaphone.fm/adchoices

Greg Brady spoke with Dr. Ragini Sharma, President of COHHE, Canadian Organization for Hindu Heritage Education about the second day of clashes between Hindus and Khalistani protestors in Brampton. Learn more about your ad choices. Visit megaphone.fm/adchoices

Summer is in full swing so it seems only fitting that this week's episode is all about heading to Camp! Join us as Rob, Ryan and Lis welcome Alex Jurgenson and Matthew Alvarnez from the Camp Bowen Division of the Canadian Organization of the Blind and DeafBlind. They discuss Camp Bowen's history as a longtime venue for campers who are blind or partially sighted, its current line-up of Summer Camps and Programs, and what makes the Bowen Island location ideal for its attendees, staff, and volunteers. Show Transcript https://atbanter.com/wp-content/uploads/2024/07/at-banter-podcast-episode-388-camp-bowen.pdf Show Notes Camp Bowen https://campbowen.ca/ Canadian Organization of the Blind and DeafBlind https://cobd.ca/ AT Banter is brought to you by Canadian Assistive Technology, providing sales and training in Assistive Technology and Accessibility with over 30 years of knowledge and experience. Visit them online at www.canasstech.com or call toll-free 1-844-795-8324 or visit their Assistive Technology Showroom at 106 – 828 West 8th Avenue, Vancouver. Need repairs on your device? Chaos Technical Services offers service and support on almost any piece of Assistive Technology, while also providing parts and batteries. Visit them online at www.chaostechnicalservices.com or call 778-847-6840.

Durhane Wong-Rieger, the president and CEO of the Canadian Organization for Rare Disorders, discusses the challenges that Canadians with rare disorders face in getting access to drugs and the risk that single-payer pharmacare exacerbates them by focusing too much on cost control and too little on the benefits of personalized medicine.This episode was made possible by the Canadian Life and Health Insurance Association and listeners like you.The Hub Dialogues features The Hub's editor-at-large, Sean Speer, in conversation with leading entrepreneurs, policymakers, scholars, and thinkers on the issues and challenges that will shape Canada's future at home and abroad.If you like what you are hearing on Hub Dialogues consider subscribing to The Hub's free weekly email newsletter featuring our insights and analysis on key public policy issues. Sign up here: https://thehub.ca/free-member-sign-up/. Hosted on Acast. See acast.com/privacy for more information.

Shailynn Taylor's journey with spinal muscular atrophy (SMA), a degenerative genetic disorder, is one of incredible resilience and hope. Diagnosed at 18 months old, she was told that her life expectancy was only twelve years. At the age of 22, she started experiencing rapid deterioration in her health and even planned her funeral. But just in time, a treatment for SMA was approved in the US, and Shailynn began advocating for access to this life-saving medication. Shailynn's mental health journey, which includes battling depression and anxiety, has been just as challenging as her physical health. She emphasizes the importance of counseling, learning coping mechanisms, and finding a balance to navigate both SMA and mental health complexities. Through her advocacy work, Shailynn shines a light on the need for change in various areas, such as accessible housing and air travel. Despite everything, Shailynn refuses to let SMA define her, instead focusing on living a life full of joy, positivity, and possibility. .......................................................................... You can find Shailynn on Instagram @shailynntaylor .......................................................................... Rising Strong Links: Instagram: @Risingstrong FREE ME TIME download mentioned in this episode: bit.ly/freemetime ............................................................................ TRANSCRIPT: Host/Lisa: Welcome back to another episode of rising strong mental health and resilience. I'm your host, Lisa Bain, and today I have an inspiring guest who shares her story of resilience in the face of a debilitating genetic disorder. She literally went from planning her funeral to planning her future. Now, let's get started. Host/Lisa: Today I'm speaking with Shailen Taylor, who's a disability advocate and motivational speaker. She has shaped her perspective to value connection and authenticity above all. Welcome to the show, Shailen. Shailynn: Thank you so much for having me. I'm so excited to be here with you today. Host/Lisa: At age 18 months, you were diagnosed with SMA, a rare degenerative genetic disorder similar to ALS. Can you tell us more about this and how it shaped your future? Shailynn: For sure? So at about a year old, my parents started to notice that I was having a bit of trouble. When I would walk, my ankles would curve in a little bit. But other than that, I was happy and healthy and meeting most of my milestones. My mom went to lots of different doctors, and they all said that it was fine, I would grow out of the way I was walking, and it would be fine. But after many opinions, at 18 months old, my parents got the diagnosis of spinal muscular atrophy, type two. They unknowingly were both carriers of the genetic disease. And by both being carriers, they had a one in four chance of having a child with SMA. And so my brother and I are 17 months apart. So before they had my diagnosis, my brother was born. And he was born with a heart defect that required open heart surgery and months and months in the ICU. And so he thankfully, is not affected by SMA, but also has his own medical battles. And so SMA is a genetic disease. It starts at birth, impacting the muscles, slowly deteriorating from the spine out. It leads to other complications with health, but ultimately takes away the ability to walk, to speak, breathe, eat, until it has deteriorated all the muscles in the body. So when I was diagnosed, they told my parents that my life expectancy was twelve years old, that there was no treatment, no cure, just to take me home and love me. But there was nothing that medicine could do to prolong my life in any way. And so I hit twelve and then hit 18. And it wasn't until I hit 22 that I finally started having health practitioners saying to me, your health is deteriorating at a rapid rate, and you need to be aware of what that looks like. Making end of life plans, I completely planned my funeral with my best friend at 20 years old, and then suddenly, there was a treatment approved in the US for my disease when there had never been something on the market. And so I began advocating for those treatments, and it would be a long fight of many years. But I eventually, in 2018, accessed treatment because of the help of my community, who fundraised hundreds of thousands of dollars in order for me to not only pay for four doses of treatment, but knowing that that would qualify me for a medical study in New York, for a clinical trial of a new treatment for my disease that was still at phase one study. Host/Lisa: And you are currently enrolled in that study and taking part in treatment? Correct. Shailynn: So I have completed that study since. After five years, I hit the end of the study. Unfortunately, about the last two years into treatment with that drug, I began seeing a decline in my strength and my energy again, and knew that likely the dose just wasn't high enough for adults as I was receiving the same dose as small children were getting. And it was an oral drug, and the drug that I had purchased was spinal injections of a drug called spinraza. It was the first drug ever to come out for SMA and has been around for almost 14 years now in the SMA community. But this is the first year that they're starting to study a new dose for adults and are really investing in the research and collecting the data of what this drug can do for adults and what possibly increasing the dose could do to benefit adults with SMA as well. Host/Lisa: So how old were you when you started these treatments at an adult, and how old are you? Shailynn: I started my first clinical trial was a two month study out of Alberta children's hospital, and it was an oral drug. They had never made it very far, but that was my first taste of wanting to see what research was like for my disease. And that was in 2016. I was 19 years old then. And so, yeah, I am now 28 years old and have been on treatment consistently since I was 23. And yeah, it's incredible to be 28 and as healthy as I am and able to still keep planning a future when for a long time in my life, that wasn't something I ever allowed myself to do. Right. Host/Lisa: So you've gone from planning your funeral to planning your future. That's a huge turnaround. Can you tell us how all of this has affected your mental health? Shailynn: Definitely. My mental health has been something I've battled with since I was in grade eight, is when I first started struggling with depression and anxiety. And it wasn't until I was 18 that I first was diagnosed with seasonal depression and anxiety. At the time and started my journey of mental health, medications and the battle of trying to be independent as a kid and wanting to push your limits and become your own person was definitely what first made me realize how different I was and how different my future would look. And that grief and jealousy for a long time was just too much, and I didn't have the tools to understand it or to cope with it. My mental health has been something that's come and gone repeatedly. I've recently been being looked at for bipolar, bipolar depression. And so just like medically, my mental health is complex, and then my life is complex on top of it. And so the combination has been much harder of a battle for me than living with SMA has been the battle with my mental health and trying. Host/Lisa: To. Shailynn: Find a balance and find the right medications, the right counseling, the right tools to be able to cope with my life and move forward in my life. Host/Lisa: So that just segues perfectly into my next question, which is, what does coping look like for you? What are your tools? What are your skills? What have you learned over the years? What works for you? Shailynn: So coping for me has definitely expanded a lot. For a long time, I coped by dissociating and learning to stay in my body and cope with the pain. I have a lot of chronic pain, so staying in my body, being able to cope with the pain I'm in, and there's the never ending medical battles. Learning to stop dissociate. Dissociating was huge for me. That was a lot of counseling. I have been going to a counselor for over 15 years now, and that's not like consistently every month, but through the hard times in my mental health journey, I lean back into counseling and being reminded of the tools that are there to cope. My medication, my sleep, being able to prioritize little things like that and realize that they also can have a big impact on my mental health, really has helped me feel a bit more in control of it. And just the more I learn about my mental health and the way I think and my patterns, the more I'm able to correct them and learn from them and be aware when I'm starting to fall back into patterns and be able to implement the different tools that are available at the time. Host/Lisa: Would you say that your counselor has helped you discover different tools, or has that been something that's just been part of your life experience, just your own learning as you go along? Shailynn: My counselors have definitely helped me discover new tools, but I think what I find most helpful with counseling is having someone who can challenge my thoughts and make me aware of the unhealthy patterns in my thoughts. And I think that those reminders I still need sometimes to be able to get out of the loops I'll get into. But I've been to over 20 counselors and I think that each one kind of leaves something different with me. And I've been able to come to terms with different things with each one. And I don't think that a person has ever done counseling. In a way, I think there will forever be ways we can learn to cope and to show up differently in the world. Host/Lisa: Absolutely. And I think an important thing that you just brought up and I can definitely relate to, is we're in our own heads. Twenty four seven. And so even though when we say things out loud to our counselor and they call us out on our bs, right, but in our own heads, it's a dialogue that goes on all the time, so it becomes our normal. And I think you're absolutely right. Having somebody be able to call us out on that or just even question, maybe not call us out so blatantly, but even just take us down through some questions and have us examine our own thoughts by exploring different things so that we can realize the self chatter in our own heads that may not even be true. Shailynn: Right, exactly. Host/Lisa: So you do a lot of advocacy work, which I absolutely love. Can you tell us a bit more about what you're involved in? Shailynn: Yeah. So my advocacy work was not something that I went into planning to do. It evolved from me advocating for treatment and realizing that really I was the only person advocating that every adult with SMA's life mattered and could be made better by a treatment that was sitting on a shelf. And the more I got into that world, the more I saw just how many areas need light shone on them and need consistent pressure and awareness in order for change to happen. So I work with advocacy for accessible housing, for accessible air travel, and then I work with newly diagnosed SMA families and helping them through their journey. I've worked with the Canadian Organization for Rare diseases, doing a lot of political advocacy with them and being right in Ottawa meeting with the people making the decisions for rare. Yeah, it has. It's ebbed and flowed and it's something that I have to be very aware while I'm doing because I burn myself out very easily. And so I have to remember that there will always be time for advocacy, and I can only do so much. But it's definitely once you have something that you're so passionate about and so passionate about changing, it just kind of becomes a part of your life, whether you want it or not. And just seeing the changes that have come from different projects I've advocated with is really like fuel to keep advocating, because changes do happen. When multiple voices and people come together, there's room for change. And believing that change is possible is key for me and my mental health to not just get down with the way things. Host/Lisa: Are. You feeling overwhelmed? Constantly juggling your responsibilities with little time for yourself? I'm excited to share a free resource with you. This eguide offers practical tips to reclaim your time and prioritize self care. Discover simple strategies to carve out moments for the things you love and recharge your batteries. Download your free copy now at bitly Freemeetime. That's bit ly freemetime. Now let's get back to the show, and you talk a lot about hope. What gives you hope? Shailynn: I think a lot of hope for me has come since treatment. But more than treatment giving me hope, it's seeing little kids and how incredible they're doing on treatment and being able to say, like, wow, if they're able to do that on treatment right from birth, this treatment can do something for me. And believing that I don't need to change anything about the way I am, but hoping that my quality of life can improve. Those little bits of hope are what I cling to. And then, just like family and friends who have always believed so much is possible for me and the community who has come alongside me over the yeah, it's everyone, it's the people who believe in me that give me hope. And then the hope I have for the future of SMA. And SMA not being something that is terminal one day, well, and by being. Host/Lisa: Part of clinical trials, you are creating that change. It may not happen today or tomorrow or next year, but you are a part of that journey of creating that change. Should be very proud of that. You have been quoted as saying that you will not let SMA define you. Can you speak a little bit more to that? Shailynn: Yeah. I think as a teenager I was really scared that my life would only be about SMA and trying to stay healthy. And it is a full time job. SMA is like a huge part of my life. And the research, the conferences, the advocacy, all of it is SMA. But I refuse to let my life just be SMA. I never wanted all my hours to be spent trying to stay alive, because then what was I staying alive for? And so I've always wanted all these experiences. But never really thought I could wait for them in the future. And so instead, it just brought me to live really fast and do all the things I'd ever dreamed while my body was healthy enough. And in doing all of those things, I was able to find myself and realize that I am so much more than SMA. But because of SMA, there's some very special work that I get to do and some amazing people in my life that I would not know if it weren't for the disease. And so I have finally, as an adult, now come to realize that SMA does not define me. It's a huge part of my life. It's a huge part of who I am. But I am my own person with my own goals and just my own experiences I want to have and vision for my life. Host/Lisa: It's interesting because I say the same words about my grief journey. Grief is embedded into every cell of my being. It will never be removed from me. I will carry it until the day I die. But I refuse to let it define me. Shailynn: Definitely, no. Host/Lisa: We are so much more than the challenges that we face. We can let them define us, definitely. We both know probably lots of people that allow that to happen. But when we make that decision not to let that happen, that's where the magic happens. Shailynn: I think it really is. And still being able to give space for that grief and for how it shaped you, but then still choosing to live and to make the most out of life, it's such a duality. But I think it's something that by the end of our lives, almost every human will have experienced both sides of life. Host/Lisa: Absolutely. I think the longer we're on this planet, the longer we're alive, the more adversity we face. Now, you may never experience another adversity such as sma. You might experience other, smaller adversities. I may experience nothing like losing my daughter ever again. Dear God, I hope not. But life is constantly throwing curveballs at us. It's unfortunately part of our learning process as human beings is what I've come to accept, I guess, on some level. But I think we do get stronger. I mean, I hated hearing that term, and I don't know how you feel about, you're so strong, right? You just kind of want to throat punch people sometimes. Nobody gave us a choice. Nobody gave you a choice or me a choice. But here we are. And it used to make me angry, but now I think, yeah, I am strong. And you, my dear, are definitely strong. And I think we get stronger by learning to carry our stuff longer and longer and longer. Right. And facing these other curveballs completely. Shailynn: Yes. And we learn to carry it with the memory of the people who are not with us. And that makes it less of a lonely battle. Always when you can just step back and remember that, yeah, there are people right next to you that other people may not see, but they're there. Host/Lisa: Absolutely. I couldn't agree more. Now, I've met you a handful of times and you're always chipper and happy and you're just like oozing with positivity. What's your secret? Shailynn: I think my secret is that I know depression, I know sadness, I know grief, and I don't want other people to be feeling those ways. And so I choose to show up joyfully. I choose to be positive and find the positives. But there is no magic trick. It's being around other people who are positive, who choose to show up with joy also, because it's a choice. It's completely a choice to show up angry, bitter, miserable, or to show up with a smile on your face. And I think it's the simplest choice we can make, is to spread kindness to the people we encounter in our day, because we all have no clue what anyone's going through that we pass. And yeah, it's taking space for myself. It's coming to a place where I've learned what I need, what breaks I need to take in order to show up that way. And for me, recently, this last year has been super hard with. I ended up getting c diffs for months and then I was declining on treatment and I had to move home. I was living in Calgary on my own and I had to move back in with my parents at 28. And there was just like a lot of grief that I was experiencing and frustration. And I chose to step away from social media for almost a year. And it wasn't because I didn't feel comfortable sharing the space I was in. It was because I didn't feel I had any positive in me to also bring to people. And I feel that it's important that we talk about the heavy and the grief and those things, but that we also are able to show up with joy while talking about those heavy things. And yeah, it was a long time for me to be able to come to terms with the quick shift my life took and building back what I was dreaming about before it kind of tumbled down. Host/Lisa: So do you think that we can fake it till we make it? Sometimes? Like, even if we're not feeling up to putting that smile on our face or being that person that brings joy. Do you think sometimes we just have to make ourselves do it to get to that point? Or do you think that's doing ourselves a disservice? Shailynn: I think that at some point, we do have to make those tiny changes, because you can stay in that heavy, but nobody is going to bring you out of the heavy except yourself. And so it really is something that you have to force a bit at first, and then it becomes natural. It becomes natural to want to make people smile and to say something kind to them and to make people feel seen. But if you're not feeling seen, the forcing will just drain you. Host/Lisa: Yeah, I think you're absolutely right. I think that there's two sides to that coin. And I agree with everything you said. I mean, there are days that I didn't feel like putting the happy face on, but I did it, and then it got easier. But I also got myself into a heap of mental health trouble by putting that mask on too much and not being honest with myself, even about what was going on inside. So I think it is a little bit of a balancing act, definitely. And there's no easy step by step process on how to work with that. I think we've all got to figure out what works for us. But on that topic, do you have any physical or mental rituals that you do for your physical and mental well being? Shailynn: Yeah, when I'm at my healthiest, I'm going to the gym, I'm stretching. I'm leaving the house at least a few times a week. But it's a bit of a balance, as everything is for me, because I also can only do those rituals when my health has the capacity for them. So they've become things that I know are good for me and that I'm my happiest when I'm doing them. But I also have to be able to pause and know that I'll be able to get back to those rituals and those activities. But sometimes I need a break. So finding that balance is tricky for me. My one ritual that I started in high school, and I'm very privileged to be able to do this, but every winter I go somewhere hot for at least a week, because being in Saskatchewan, where it's freezing and so much snow, I'm pretty much trapped in my house so much. And I need to have that freedom back, to be able to drive my wheelchair down a sidewalk, to be able to go where I want on my own time, and also to have a break from the muscle pain that I get all winter from being so tense. And so that is my one ritual that I try my best to save for and stick to is to have that week of recharge in the season that I know is most challenging for me. And it really does help me to make it through the rest of the winter when I've had a bit of a break from feeling so isolated. Host/Lisa: Absolutely. I think there's something powerful, too, in having something to look forward to. Right. Even though things are really awful, like, it could be 400 below or so, it seems, you know, that that trip is coming so good for you for making that a priority. Shailynn: Yeah, it's been very good for me. And then just like I love to swim, I can move freely in the water. So just things like that in that week, I can really take care of myself and move my body. And, yeah, it's very healing. And something that I very much recommend when it's possible is just any kind of little break from everyday life to really recharge. Host/Lisa: Absolutely. I agree. I know that our listeners are going to want to go online and check you out and maybe book you as a speaker. So where's the best place for them to go and do that? Shailynn: The best place for them to reach me is on Instagram. I'll have the link to you for the episode. And, yeah, send me a message. I love being able to be out in the community. I work with everything from schools and kids to women's events, and it really does give me such a purpose to be able to go and spend time connecting with people in the community and being able to normalize disability a bit more. Host/Lisa: And thank you for being so raw and vulnerable. And you've made me comfortable asking you some really hard questions. And I feel like I have learned a little bit more about what SMA is all about and the challenges that people like yourself face. So thank you so much for being my guest today on rising strong. Shailynn: Thank you for giving me a space to share my story. I appreciate it very much so. Host/Lisa: And to the listeners, stay well and be resilient and remember that you were made for more. Catch you next time.

This episode is all about fat—both eating it and being it—and some of the many ways in which fat and fatness have highly complex effects on our psyches, our well-being, and our societies in general. The visibility (and invisibility) of fat in our worlds is a starting point, followed up with conversations with critical nutrition scholar Dr. Jennifer Brady, fat activist and educator Virgie Tovar, and naturopathic health consultant Deb Oleynik. (Yep, this is a longer-than-usual episode…) David and Maxime taste some unctuous hors d'oeuvres in the aperitivo edition of the ‘Stick This in Your Mouth' segment, and medical physicist John Schreiner responds rapid-fire style to the Food Questionnaire.Guests:Dr. Jennifer Brady is a professor of nutrition and dietetics at Acadia University in Wolfville, Nova Scotia. Her research focuses on the ways in which science and society come together to produce various effects in and on our bodies, including such themes as health justice, weight-neutral approaches to practice, and the intersectionality of gender, race, and class. She has written and edited many scholarly articles and books, including Conversations in Food Studies and Feminist Food Studies. Virgie Tovar is a writer, podcaster, Instagrammer, and public speaker who has a master's degree in sexuality studies with a focus on the intersections of body size, race, and gender. For more than a decade, she has been non-judgmentally teaching people about the harmful effects of weight-based discrimination and the benefits of celebrating body diversity. Virgie has been featured by the New York Times, Tech Insider, BBC, MTV, Al Jazeera, NPR, and Yahoo Health. She lives in San Francisco.Deb Oleynik is a naturopathic health and wellness consultant who helps clients find and adjust the lifestyle factors that contribute to chronic disease. She is committed to the reality that the food we eat and the environments that surround us contribute greatly to our wellbeing. Deb has a doctorate in Naturopathic Medicine from Bastyr University and a master's degree in Food Culture and Communication from the University of Gastronomic Sciences.John Schreiner is a medical physicist who served the Canadian medical physics community in many roles including as newsletter editor for the Canadian Organization of Medical Physicists and president of as Canadian College of Physicists in Medicine. In 2019, he retired as Chief of Medical Physics at the Cancer Centre of Southeastern Ontario in 2019, and he is now Professor Emeritus of Oncology and Physics, Engineering Physics & Astronomy at Queen's University in Kingston, Ontario.Host/Producer: David Szanto Music: Story Mode@makingamealpodcast makingamealofit.com

Dr. Durhane Wong-Rieger is the President and CEO for the Canadian Organization for Rare Disorders. She is involved and Chair to many committees and organizations. She is also an author, lecturer and trainer. She is the perfect person to talk with about making healthcare a level playing field for all.  As you know we have interviewed so many people on this podcast talking about the challenges in different countries to medications. In Egypt the Ministry of health doesn't recognize the disease, CF families there don't have the basics like liquid vitamins for their infants. In Thailand, it's the same, in India, infants are dying before they're even diagnosed, in Pakistan, families can't get drugs. And on and on.Dr. Wong-Rieger recently presented at the World Health Organization, Essential Medicines Open Forum in regard to low- and middle-income countries access, or lack of it, to drugs.Rare Disease International has done some research about this issue that Durhane will share with us.Dr. Wong-Riegers organization has proposed to WHO for a collaboration on Essential Medicines for rare disease which ties to her collaboration on global rare disease networks.There is an initiative the P-Q-M-D or Project for Quality Medicinal Donations that has been trying to launch on “donations to sustainability” that they are recruiting companies and donor foundations to try to support. This development of the initiative is now in Stage 2 of the feasibility work.There are models out there for global work like the World Federation of Hemophilia and International Gaucher Foundation. There is no international CF organization so far, and we will discuss that here.She is Chair of Rare Disease International, Chair of Asia Pacific Rare Disease International, Treasurer of United Nations Nongovernmental Organization for Rare Diseases. Chair of Patient Advocates Constituency Committee of the International Rare Disease Research Consortium, Patient Advisor to the APEC Rare Disease Network, member of the Editorial Board of The Patient- Patient Centred Outcomes Research, member of the Global Commission to End the Diagnostic Odyssey for Rare Diseases and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of Ontario's Rare Disease Implementation Working Group and member of Genome Canada Steering Committee for the Rare Disease Precision Health Initiative. She is a certified Health Coach. Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada.  She is a trainer and frequent lecturer and author of three books and many articles.Producer: Beth Vanstone  If you'd like to be featured contact her at: beth@thebonnellfoundation.orgPlease consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

The Hamilton Today Podcast with Scott Radley: The downbound lanes of the Claremont have been closed amid concerns of erosion. What brought this on. A meeting was held last night between HDSB, parents and stakeholders about the situation at Oakville Trafalgar high school and the status of the dress code policy. With this new health care deal, how will it impact doctors and the care you receive? The NHL trade deadline comes tomorrow. Where do Canada's teams stand? A survey done on behalf of the Canadian Organization for Rare Disorders has found that many Canadians living with rare diseases struggle for years to access care. It is all coming up on the Hamilton Today Podcast! Guests: Jackie Kennedy, Director, Engineering Services. Murray Costello, Director, Southeast Region Operations, Enbridge Gas. Sheba Siddiqui, Producer and On Air Co-ordinator for Toronto Today. Dr. Mekalai Kumanan, President of the Ontario College of Family physicians and family doctor in Cambridge. Duff Conacher, Co-Founder of Democracy Watch. Ryan Kennedy, Senior Writer, The Hockey News. Stephanie Gandulla, maritime archaeologist and the Resource Protection Coordinator for NOAA's Thunder Bay National Marine Sanctuary. Matt Francis. Ward 5 City Councillor, City of Hamilton. Steve Parrott, has two adult daughters with VHL disease and he serves as the Board Chair for the Canadian VHL Alliance. Grace Tong is the Vice President & Equity, Diversity and Inclusion Practice Lead, Ipsos Public Affairs, Canada. Host – Scott Radley Content Producer – Elizabeth Russell Technical/Podcast Producer – William Webber Podcast Co-Producer – Tom McKay News Anchor – Dave Woodard & Jennifer McQueen Want to keep up with what happened in Hamilton Today? Subscribe to the podcast! https://megaphone.link/CORU8835115919

The blind leading the blind. One of our guests this week on Outlook says: “That is like the best idea ever!” On our first episode of October's Blindness Awareness Month (or what we like to call BAM) we're speaking with Alex Jurgensen and Jessica Gladysz from the Canadian Organization of the Blind and Deafblind (COBD) - Alex is director of operations and community engagement with the Camp Bowen Division and Jessica is Director of Programs and Student Affairs for the Pacific Training Centre Division and has been of the Camp Bowen Division in various roles. Out on the west coast, a short 20 minute boat trip off west Vancouver there is an island, the home of a community of blind Canadians for over 100 years since the CNIB was there. They created a camp for blind children and Camp Bowen on Bowen Island is where many blind children, including our guests, met and discovered friendship and common ground. There, they weren't isolated or blocked by barriers. Instead, they were welcomed and found out, many for the first time, that it was okay to be blind. And on the show today, we learn about the history of Bowen Island and Camp Bowen and the impression it left on so many, about how the Pacific Training Centre for the Blind in Victoria and Camp Bowen (Camp Bowen Working Group) came together with their programs for teaching blind Canadians the skills they needed, in many cases for the first time, for success, and the kinds of programs offered as the Canadian Organization of the Blind and Deafblind was formed and is rapidly and over time expanding. Now Camp Bowen and COBD offer summer camps, braille literacy camps for kids, and music camps for children and adults and provide a glamping situation, alongside activities such as horseback riding, swimming, boating, self-defense, boardgames, camp fires, and movie nights. They have received federal funding for a 4-year plan, access to a beach front with 11 thousand square feet on 2 and a half acres, and will offer 8 camps in summer and are now running a 10-month intensive independent skills program (eventually for up to 38 people) where students are taught cane travel, braille instruction, assistive tech training, cooking and home skills, and employment preparedness. We're no longer being taken care of (by CNIB or others) - the program is Blind People In Charge and they really are, including (for the first time in Canada) the Deafblind community right there in COBD's name. Blind and Deafblind Canadians have been a major part of Bowen Island for a century, a solid part of the culture, and have big plans for the future. So check out everything they offer on their website, including 21 programs, (some virtual), a tech loan bank, and blind hub with lots of resources. Also consider making a donation if you have the means as these programs are all so important here in Canada and require funding to continue. https://cobd.ca

Megan Adediran, President of the Hemophilia Foundation of Nigeria and Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders, join the podcast to talk about the importance of finding new and innovative ways to expand access to life-saving therapies for people living with bleeding disorders. 

Gene therapy is at a pivotal moment. For eligible rare disease patients, the potential impact could be huge. So how can we support that potential to fruition and what will it mean if we do? In our season finale, host Adam Rutherford and guests take a peek into what a world with successful gene therapies could look like for patients, healthcare and society.Featuring guests:Durhane Wong-Rieger, President & CEO at Canadian Organization for Rare DisordersErik Paulsen, Chair, Institute for Gene TherapiesKarolina Hanslik, Former Senior Project Manager, EURORDISNikhil Gadre, Senior Director, Global Commercial, Hemophilia Gene Therapy, PfizerPaige Bischoff, Senior Vice President, Global Public Affairs,  Alliance for Regenerative MedicinePaolo Morgese, EU Director, Market Access, Alliance for Regenerative MedicineReda Guiha, IDM Regional President, Rare Disease, PfizerSimone Boselli, Director, Public Affairs, EURORDISTomislav Sokol, Member of European Parliament

As with any new breakthrough medicine, entering the healthcare system comes with a host of obstacles and potential barriers. In this episode, Adam Rutherford and guests break down the big changes needed within the global healthcare ecosystem to ensure that, once approved, the therapies we're researching now, like gene therapy, reach the patients who need them.Featuring guests:Emily Crossley, Chief Executive Officer, Duchenne UKErik Paulsen, Chair, Institute for Gene TherapiesBert Bruce, Regional President, North America, Rare Disease, Pfizer  Tomislav Sokol, Member of European ParliamentKarolina Hanslik, Senior Project Manager, EURORDISSuneet Varma, Global President, Rare Disease, PfizerNikhil Gadre, Senior Director, Global Commercial, Hemophilia Gene Therapy, PfizerDurhane Wong-Rieger, President & CEO at Canadian Organization for Rare DisordersKatherine Beaverson, Senior Director and Patient Advocacy Lead, Rare Disease Research Unit, PfizerBrenda Cooperstone, Senior Vice President, Chief Development Officer, Rare Disease, Pfizer

Gene therapy is a revolutionary field of science that has the potential to transform lives. It presents this big question; What if we could treat a disease at its root cause, rather than just the symptoms? On the first episode of Science Will Win, host Adam Rutherford takes us through the history, science, and significance of gene therapy.Featuring guests:Laurence Woollard, Director, On The Pulse ConsultancyDirk Vander Mijnsbrugge, Vice President, Medical Affairs, Rare Diseases, PfizerSonal Bhatia, Chief Medical Officer, Rare Disease, PfizerDurhane Wong-Rieger, President & CEO at Canadian Organization for Rare Disorders

Pharmaceutical drugs are a pillar of modern healthcare - from preventative medicines to life-saving therapies. We therefore rely on pharmaceutical companies to discover, develop, and deliver new drugs to patients in need. We know that this process is both risky and expensive, but does that justify the drug prices we see in Canada today? Who decides what’s a fair drug price anyways? And what is the role of academic science in this whole operation? Join us as we answer these questions and more, with our expert guests: Dr Alison Symington, consultant with Life Sciences Ontario, describes the process of drug discovery and the relationships between academia and industry. Dr. Wong-Rieger, President and CEO of Canadian Organization for Rare Disorders, describes the challenges faced by individuals with rare diseases. Dr. Nigel Rawson, Senior Fellow with the Fraser Institute, introduces us to the Patented Medicine Prices Review Board and their upcoming changes. Finally, Dr. Joel Lexchin, Emergency physician at the University Health Network and Canadian drug policy expert, explains some of the challenges to setting fair drug prices in Canada. Profile - Dr. Alison Symington Profile - Dr. Durhane Wong-Rieger Profile - Dr. Nigel Rawson Profile - Dr. Joel Lexchin Patented Medicine Prices Review Board (PMPRB) Proposed PMPRB changes Canada Pharmacare Act (Bill C-213) Canadian Organization for Rare Disorders (CORD) Innovative Medicines Canada Article - academic vs industry for drug discovery Drug Discovery @ U of T

Pharmaceutical drugs are a pillar of modern healthcare - from preventative medicines to life-saving therapies. We therefore rely on pharmaceutical companies to discover, develop, and deliver new drugs to patients in need. We know that this process is both risky and expensive, but does that justify the drug prices we see in Canada today? Who decides what’s a fair drug price anyways? And what is the role of academic science in this whole operation? Join us as we answer these questions and more, with our expert guests: Dr Alison Symington, consultant with Life Sciences Ontario, describes the process of drug discovery and the relationships between academia and industry. Dr. Wong-Rieger, President and CEO of Canadian Organization for Rare Disorders, describes the challenges faced by individuals with rare diseases. Dr. Nigel Rawson, Senior Fellow with the Fraser Institute, introduces us to the Patented Medicine Prices Review Board and their upcoming changes. Finally, Dr. Joel Lexchin, Emergency physician at the University Health Network and Canadian drug policy expert, explains some of the challenges to setting fair drug prices in Canada. Profile - Dr. Alison Symington Profile - Dr. Durhane Wong-Rieger Profile - Dr. Nigel Rawson Profile - Dr. Joel Lexchin Patented Medicine Prices Review Board (PMPRB) Proposed PMPRB changes Canada Pharmacare Act (Bill C-213) Canadian Organization for Rare Disorders (CORD) Innovative Medicines Canada Article - academic vs industry for drug discovery Drug Discovery @ U of T

Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Disorders, joins Natalie Yeadon, Co-Founder & CEO at Impetus Digital. We explore how to best involve patients in all aspects of the drug lifecycle, innovative approaches to drug access and financing, and other topics related to rare disease treatment and advocacy.Schedule a meeting with Natalie Yeadon: https://www.meetwithnatalie.comNatalie Yeadon LinkedIn: https://www.linkedin.com/in/natalieyeadon/Impetus Digital Website: https://www.impetusdigital.com/Impetus Digital LinkedIn: https://www.linkedin.com/company/impetus-digital/Impetus Digital Twitter: https://twitter.com/ImpetusadboardsImpetus YouTube: https://www.youtube.com/ImpetushealthcareDurhane Wong-Rieger: https://www.linkedin.com/in/durhane-wong-rieger-5851b39/Canadian Organization for Rare Disorders: http://www.raredisorders.ca/

Dr. Gillian Einstein is a Professor in the Department of Psychology at the University of Toronto where she leads the Einstein Lab on Cognitive Neuroscience, Gender & Health. She is also the Founder of the Collaborative Specialization in Women's Health at the University of Toronto, The Wilfred and Joyce Posluns Chair of Women's Brain Health and Aging, and Guest Professor of Neuroscience and Gender Medicine, Linköping University, Linköping, Sweden. She founded the Canadian Organization for Gender & Sex Research. You can learn more about her work here and find her lab on Twitter.We talk about how the social can become biological. Stigma and stress are connected to brain health, including Alzheimers and dementia, as well as metabolic issues such as diabetes. We discuss how COVID-19 stigma impacts older persons framed as vulnerable and the need to understand the long-view and wisdom that older people bring to society. Dr. Einstein likes to startle people to get them to shift their perspective to become alert and aware. We shout out the Lofoten Islands as a dream destination. Gillian talks about following your heart and your pleasures to have an honest life. Episode hosted by Dr. Carmen Logie. Original music and podcast produced by Cozmic Cat. Supported by funding from the Canada Foundation for Innovation and Canada Research Chairs program. 

Host Peter Brenders, Founder & CEO of Kontollo Health, interviews Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Disorders (CORD) about patient groups in the age of Covid-19. Get on the email list at healthbiz.substack.com

Today’s show is brought to you by Meridian Credit Union - expecting more for your money, that’s wealth esteem! www.meridiancu.ca 1/3 of Canadians retire earlier than planned. We're talking Aging Well: Planning for Plan B with Meridian Credit Union Senior Wealth Advisor Nancie Taylor - learn more: https://ww.meridiancu.ca According to a new survey from the Canadian Organization for Rare Disorders, Canada’s rare disease caregivers are under immense stress. What needs to change? We're joined by Danielle Weil, she’s a mother of twin girls who were born just a year ago – and one of her little girls has Cystic Fibrosis. Learn more - https://www.raredisorders.ca Movie & TV reviews with film critic Anne Brodie - http://www.whatshesaidradio.com/what-she-said/snamapril122019/ Based on the 2014 adult fiction novel by Anna Todd, 'After' follows a young woman who falls for a guy with a dark secret. Josephine Langford, Hero Fiennes Tiffin and Author Anna Todd chat with film critic Anne Brodie about making the film. Canadian singer Ria (Victoria Azevedo) performs her new single I'm Good LIVE in our #StudioSessions - https://www.instagram.com/victoriaaazevedo & more! SUBSCRIBE to What She Said & never miss an interview! http://www.youtube.com/WhatSheSaidTalk Miss a show? Stream & download full shows for free on iTunes: http://www.apple.co/1U700c0 Follow us on Facebook/Twitter/Instagram: @WhatSheSaidTalk Website: http://www.whatshesaidtalk.com What She Said! aims to inspire and uplift women by giving them a voice in pursuing their professional and personal goals through showcasing successful women across Canada and by creating opportunities for others to do the same. Tune in Saturdays at Noon on 105.9 The Region or listen live: http://www.1059theregion.com

The Empire Club of Canada Presents: National Pharmacare Expert Panel On How a National Pharmacare Plan and Regulatory Reforms Impact Ontario's Patients, the Life Sciences Industry and Health System The federal government is considering a national pharmacare plan and fundamental changes to how the prices of innovative medicines are regulated in Canada. How will these reforms affect Ontario's patients and the province's vibrant and growing life sciences sector? This Empire Club of Canada Luncheon Panel moderated by Ms. Jane Taber will feature a dynamic discussion with Canadian pollster Mr. Nik Nanos and leaders from Canadian public policy, patient advocacy and health system Moderator: Jane Taber, Vice-President, Corporate Affairs, NATIONAL Public Relations; Former Political Correspondent Polling Presentation: Nik Nanos, Chairman, Nanos Research Group of Companies Panelists: Michael Decter, President & CEO, LDIC Inc.; Former Deputy Minister of Health in Ontario Sean Speer, Senior Fellow in Public Policy at the University of Toronto's Munk School of Global Affairs and Public Policy and Senior Fellow for fiscal policy at the Macdonald-Laurier Institute Durhane Wong-Rieger, President & CEO, Canadian Organization for Rare Disorders Closing Remarks: Jason Field, President and CEO, Life Sciences Ontario *The content presented is free of charge but please note that the Empire Club of Canada retains copyright. Neither the speeches themselves nor any part of their content may be used for any purpose other than personal interest or research without the explicit permission of the Empire Club of Canada.* *Views and Opinions Expressed Disclaimer: The views and opinions expressed by the speakers or panelists are those of the speakers or panelists and do not necessarily reflect or represent the official views and opinions, policy or position held by The Empire Club of Canada.*

Health Canada has derailed a long-fought effort to establish a framework for orphan drugs. Last month the agency, without warning, removed from its website all documents relating to the effort. The agency says its conducting a broader review of regulations and will now seek to address the aims of the orphan drug framework through other means. The decision is a blow to rare disease advocates in Canada, who view the move as a response to provincial governments who feared an orphan drug designation would be a license to charge high prices for medications. We spoke Durhane Wong-Rieger, president and CEO of The Canadian Organization for Rare Disorders, about the Health Canada’s unexpected decision, why an orphan drug framework is seen as critical to making needed therapies available in Canada, and what it means for the rare patient community there.

Baldo is a Serial Inventor, Investor and Venture Capitalist working with clients and master mind groups around the world to identify Inventions, products and businesses that meet his teams standards and high business objectives, then he will oversee, negotiate and structure a deal to maximize the benefits and return on investment for his clients. Mr. Minaudo’ full-time career began at the Canadian Organization of Small Business, during which time he also started a very successful part-time business designing, manufacturing and selling home products into the Toronto market. Meanwhile, he assisted with managing large-scale residential real estate properties. Today, Baldo continues to concentrate on what he excels at, which is to link people with the BEST solutions, but more importantly to help his clients buy, sell, and invest in a successfully operating business. As part of his service, he manages investment and rental properties for his clients in several countries. With a highly developed understanding of urban lifestyles, living options, housing requirements and property economics, Baldo helps his clients find solid purchases and negotiates the best possible price, whether for the seller or the buyer. When you’re ready to make a change in your life or make a more solid investment in your future for yourself and your family, Baldo will take the time to guide you through the process. www.decatxt.com www.tbic.us The Inventors Launchpad – Roadmap to Success Series is presented by Inventors Launchpad in beautiful Tampa Bay, FL and hosted by Carmine Denisco. Carmine is an accomplished Author, Entrepreneur, Inventor and Co-founder/Managing Partner of Inventors Launchpad. Along with his business partner Rick Valderrama has changed the face of the invention industry and look forward to helping inventors from all over the world move their ideas forward. For more information please visit www.inventorslaunchpad.com

Only 60 percent of treatments for rare disorders make it into Canada and most get approved up to six years later than in the United States and Europe, according to the Canadian Organization for Rare Disorders. In an effort to change the rare disease landscape in Canada, CORD has released a multi-pronged rare disease strategy for the country. We spoke to Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders, about the need for a national strategy, the effort to pass a regulatory framework for orphan drugs, and what it will take to make a national strategy a reality.

She once drew on the back of my neck for no reasonSuzanne E.MacDonald is a professor in the Department of Psychology at York University, appointed to the graduate programs in both Psychology and Biology.  She received her PhD in animal learning and behavior from the University of Alberta, and then did postdoctoral work at the University of British Columbia, before moving to York in 1990.   In addition to maintaining an active research and teaching career, Suzanne has held several senior administrative positions at York, including Associate Vice President (Research), and most recently, five years as Chair of the Department of Psychology.   She has three main areas of research expertise:·      Memory and cognition (“how animals think”) ·      Psychological well-being of captive animals·      The impact of human activity on wildlife Her research is conducted both in the field, at sites in Kenya, Costa Rica and throughout Southern Ontario, as well as at the Toronto Zoo, where she has volunteered as their “Behaviorist” for over 25 years.   She served on the Zoo’s Board of Management and Zoo Foundation Board for several years.   She also served as a Board member for the Canadian Organization for Tropical Education and Rainforest Conservation (COTERC), and helped to establish a biological field station near Tortuguero, Costa Rica.  She continues to work in Costa Rica, as part of the project team to build a York facility in Las Nubes, near San Isidro.  Currently, she is a member of the Board of Directors for the Canadian Polar Bear Institute (www.polarbearhabitat.ca), and also a member of the Lewa Canada Board, a nonprofit foundation established to support the work of the Lewa Wildlife Conservancy (www.lewa.org) in northern Kenya.We talked about all kinds of cool stuff, including Suzanne's work with orang-utans, elephants and racoons.Follow Suzanne on twitter.Thanks again to Red Arms for letting me mash up their music in the closing theme. Buy their music now.mp3 download

Nothing More Beautiful is a series from the Archdiocese of Edmonton with a catechesis and a witness talk that aims to renew the faithful's relationship with Christ. This week on S+L Radio Archbishop Richard Smith of Edmonton and Lea Singh of the Ottawa-based Canadian Organization for Life and Fa...

Nothing More Beautiful is a series from the Archdiocese of Edmonton with a catechesis and a witness talk that aims to renew the faithful’s relationship with Christ. This week on S+L Radio Archbishop Richard Smith of Edmonton and Lea Singh of the Ottawa-based Canadian Organization for Life and Fa...