Podcasts about als association

May 27, 2025 - A DNA test can reveal important health information, but legislation in Albany would restrict insurers from using that genetic data to inform their coverage costs. We consider this restriction with Danielle Spadafora, managing director of advocacy for The ALS Association, and Ashley Crawley, whose father died from ALS in 2024.

On this episode of the Doing What Matters podcast, Teresa has the joy of sitting down with  special guests Mary Valloni and Mike Kim, who discuss their new book aimed at helping Christian missionaries with fundraising. They delve into the origins of their partnership, the challenges they faced, and the meaningful journey that led to the book's creation. Mary and Mike share insights on marketing, cutting through Christian jargon, crafting mission statements, and the transformative impact of their work. They also reflect on the deep trust and friendship that has been foundational to their collaboration. This episode is filled with practical advice and heartfelt storiesand bringing meaning to your life work. TIME STAMP:00:00 Introduction and Guest Welcome00:55 The Journey to Writing the Book03:35 Target Audience and Mission04:58 Personal Stories and Partnership08:02 Challenges and Mindset in Fundraising11:21 Simplifying Mission Statements15:47 Practical Advice for Missionaries20:17 Encouragement and Final Thoughts24:40 The Importance of Authenticity in Ministry25:54 Building Trust and Partnership27:13 Navigating Personal and Professional Challenges28:56 The Power of Mutual Support34:50 Reflecting on the Journey and Future Goals45:31 Concluding Thoughts and ResourcesCLICK HERE for a link to the bookGuest Information:Contact Mike Kim & Mary Valloni at mary@maryvalloni.com  http://fullyfundedacademy.com Mary Valloni is a respected expert on fundraising, a podcast host, and the award-winning author of the book Fundraising Freedom. With over twenty years of fundraising experience with organizations, including the American Cancer Society, the ALS Association, and the Special Olympics, she now shares her expertise as a coach, trainer, and mentor to nonprofit leaders around the world. For more information about Mary, visit MaryValloni.com. Mike Kim is a marketing strategist and author of the Wall St. Journal and USA Today bestseller, You Are the Brand. His clients include faith-driven organizations such as Catalyst, People of the Second Chance, and Global Mission Awareness, as well as numerous churches, ministry schools, and para-church organizations. Mike has been featured in and written for Inc., Entrepreneur, and The Huffington Post. For more information about Mike, visit MikeKim.com.  Email: mary@fullyfundedacademy.com Our bestselling book, Fully Funded: The Christian Missionary's 7-Step Guide to Raising Support and Growing Your Donor Base in Today's Modern World.FREE RESOURCES:Take the FREE Intro to Needs & Values AssessmentReady to discover what uniquely matters to YOU? CLICK HERE to take our FREE Intro to the Needs & Values Assessment.FREE Download: 4 Steps to Simplify Your CalendarReady to uncover more time on your calendar? This FREE download will help you remove what doesn't matter, so you have space for what does. Click here to get this FREE resource!OTHER RESOURCES:Check out our YouTube Channel!Prefer to watch AND listen? Check out our YouTube channel for the podcast episode on video! Make sure to subscribe so you get all the latest updates.My Book LinkMy new book, Do What Matters, is available NOW! Banish busyness and discover a new way of being productive around what truly matters. Learn more at DoWhatMattersBook.com.LifeMapping ToolsWould you life to discover  Life Mapping tools to help you recognize and respond to God in your Story. Check out these tools here https://www.onelifemaps.com/JOIN OUR COMMUNITY & CONNECT WITH ME:Become part of the FREE REALIFE Process® Community! Connect with Teresa and other podcast listeners, plus find additional content to help you discover your best REALIFE.Connect with your host, Teresa McCloy, on:Facebook - The REALIFE Process® with Teresa McCloyInstagram - teresa.mccloyLinkedIn - teresamccloyAbout Teresa McCloy:Teresa McCloy is the founder and creator of the REALIFE Process®, a framework designed to empower individuals and groups with the tools, training, and community needed for personal and professional growth. Through the REALIFE Process®, Teresa is on a mission to help others grow in self-awareness, establish sustainable rhythms, and enhance their influence and impact by integrating faith and work into their everyday lives. She lives with her husband of 42 years on their 5th generation family farm in central Illinois and enjoys great coffee, growing beautiful flower gardens and traveling as much as possible. About Erica Vinson:Erica Vinson helps clients walk through defining moments with confidence and courage enabling them to move forward in freedom and embrace fearless living. As an ACC Credentialed and Certified Professional Life & Leadership Coach, she uses wisdom from all 3 Centers of Intelligence to help clients gain deeper self-awareness and grow in relationships with others both personally and professionally. Erica is a certified REALIFE Process® Master Coach, an ©iEnneagram Motions of the Soul Practitioner, and has a certificate in Spiritual Transformation through the Transforming Center. She lives in the Metro East St. Louis area and enjoys spending quality time with friends and family, golfing, tennis, boating/water skiing, traveling, is a bit of a technology nerd and loves learning!

This is a special episode all about the Boston Marathon. The 129th Boston Marathon will take place on April 21, 2025 and holds a special place in the hearts of those in this episode. There are also 174 charities participating in the marathon. See below on how to show your support. Our guest in this episode is Dr. Kristin Whitney, who is an Assistant Professor in Orthopedics and Sports Medicine at Harvard Medical School and the Director of the Injured Runners Clinic at Boston Children's Hospital. She is also the Boston Marathon Medical Tracking Program Team Captain. We talk about Kristin's experiences and perspectives in these roles and how she has used her learnings and expertise to improve performance for others. She shares her story of a clinical care team that made a huge impact in her and her family's life and how that fueled her passion to bring excellent clinical care to so many today. Kristin also shares a groundbreaking study with a team that is on the frontiers of performance research. We were inspired by this conversation and hope it inspires you too! Thank you to our sponsors! The Wu Tsai Human Performance Alliance: https://humanperformancealliance.org/ Connect with Dr. Kristin Whitney! Website: https://www.childrenshospital.org/directory/kristin-whitney Instagram: @kristinwhitney.md Twitter: @KristinWhitney LinkedIn: https://www.linkedin.com/in/kristin-schwarz-whitney-md-ma-a1037947/ Boston Marathon Research Study: https://bjsm.bmj.com/content/59/4/222 Donate to Team Challenge ALS via Hannah's page: https://www.givengain.com/project/hannah-raising-funds-for-the-als-association-89275 Learn more about the ALS Association: https://www.als.org/ Donate to other 2025 Boston Marathon charities: https://www.baa.org/races/boston-marathon/charity-program Connect with BOOM! Twitter, Instagram, and Facebook: @biomechanicsonourminds LinkedIn: linkedin.com/company/biomechanicsoom/ YouTube: Biomechanics On Our Minds Website: biomechanicsonourminds.com More from Kristin and her team: Runners World Magazine feature: https://www.runnersworld.com/health-injuries/a63084616/low-energy-availability/ Boston Children's Hosp Blog: https://answers.childrenshospital.org/low-energy-availability-boston-marathon/

This episode originally aired December 14, 2025: Anne Supplee, a Care Services Manager at The ALS Association joins host Ken Haglind on “Living Health and Aging Well” radio show to talk about the programs and services of The ALS Association. ALS, also known as Lou Gehrig's disease, is a progressive disease that causes individuals to lose their ability…

In this month's episode, Roberto and Martha chat with Deborah Ferrell, Director of Care Services for the San Diego chapter of the ALS Association. Listen to their discussion about understanding the nature and course of ALS, and the challenges and rewards of caring for someone with the disease. ALS is a neurodegenerative disease that impacts the cells of the brain and spinal cord. Keywords: caregiving, ALS, Lou Gehrig's Disease, ALS caregiving, case management, neurodegenerative disease,

Anne Supplee, a Care Services Manager at The ALS Association joins host Ken Haglind on “Living Health and Aging Well” radio show to talk about the programs and services of The ALS Association. ALS, also known as Lou Gehrig's disease, is a progressive disease that causes individuals to lose their ability to walk, talk, eat and eventually breathe. The…

"LUKi and the Lights" is not just an animated short film; it's a beacon for children trying to grasp the complexities of ALS. Inspired by the real-life journey of Anjo Snijders and Sascha Groen, this episode unravels how their personal ALS/MND experiences fueled the creation of a groundbreaking resource for families worldwide.  Hear how the layers of creativity, medical accuracy, and emotional authenticity make this film a vital tool for understanding ALS/MND.Meet my insightful guests — Toby Cochran, Adrian Ochoa, and Dr. Melinda Kavanaugh — who reveal the unexpected journey behind this project. Dr. Kavanaugh shares her unique path into the collaboration, while Toby and Adrian discuss how this team navigated challenges to create a story that resonates globally and transcends cultural and linguistic barriers. Their dedication ensures the film retains its heartfelt essence and medical integrity, proving invaluable for children and families.Beyond the screen, "LUKi and the Lights" is making waves with its global reach and festival appearances, even vying for Oscar consideration.   As a follow-up to this episode, we invite you to participate in a Special Virtual Screening, Tuesday, November 12th at 7pm EST, where you can connect with the creators and delve deeper into the mission of spreading ALS awareness. Join us in supporting this initiative by visiting Global Neuro YCare's website to help bring LUKi's message to families worldwide.  Thank you for sharing LUKi with your friends and family.  If it's on your heart to review this episode to help share LUKi, thank you for doing so!Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Rick lives with ALS. He and his wife discuss his diagnosis and how their lives have changed. You'll be inspired by their courrage and optimistic outlook.Danatria Spears is the associate director of development for the ALS Association of Texas. The ALS Walk on Saturday Nov 16th at the University of Houston. www.als.org

Do you know about the neurological disease ALS? Elder Care Coordinator Pati Bedwell speaks with Melissa Enfinger the Director of Education and Resource Development of the ALS Association, about the progression of the disease, potential causes and treatment, and resources available.

Melissa Enfinger is the Director of Education & Resource Development at The ALS Association

See omnystudio.com/listener for privacy information.

Season 3 kicks of with a battle of best pals from South Florida! Luke Tennie (Shrinking and Nickel Boys) goes up against Esteban Dager (Suits and Players) for 4 rounds of pub style trivia. Luke is playing for Orphans Hope while Esteban is playing for The ALS Association. Follow us @youshouldknowbetterpod - please rate, subscribe and review!

We've talked before about how appreciative we are of our partners, so this summer we wanted to give some love to those folks! We're having each of our partners on to talk about their businesses and whatever else we can get in to; take a listen to learn a little about their services and see what else is going on this summer! This week: Tony Nash from AZee Branding Solutions: 6:30 Noah Jacobs from Jacobs Insurance: 23:06 Kori Shook from Kori Shook & Associates: 41:49 Jim Woodworth from Success Group Mortgage & Servicing: 55:17 Sarah McNamara from Memorial Healthcare Wellness Center: 1:10:49 Thanks as always to all our great partners: Rivals Taphouse & Grille, Nelson House Funeral Home, Detroit Jerky, Shiawassee County Fair, Memorial Healthcare Wellness Center, AZee Branding Solutions, Kori Shook & Associates, Success Group Mortgage & Servicing, ALS Association, Jacobs Insurance, z925 The Castle, SportsNet MI

4th of July has come and gone, and that means on with the rest of the summer. The MLB All Star Game and the Olympics are around the corner, we get in to a couple of the hot topics around those events. Michigan football has a new head coach, are they being overlooked after winning a title? A quick Tedertainment Tonight, and a Detroit Jerky taste test. Take a listen and hit us up @3pointpod! Thanks to: Memorial Healthcare Wellness Center, Nelson House Funeral Home, Rivals Taphouse & Grille, Success Group Mortgage & Servicing, AZee Branding Solutions, Detroit Jerky, Kori Shook & Associates, Jacobs Insurance, Shiawassee County Fair, SportsNet MI, ALS Association, z925 The Castle

Guest: Ben Gioia   Guest Bio: Ben Gioia (“joya”) is a four-time, best-selling author, podcast, and international radio show host whose teachings are used by more than 80,000 leaders & game-changers. Ben helps folks write great books in as little as 5 weeks, enjoy 5-figure speaking fees, and attract 6-figure consulting. (Even BEFORE publishing!) Ben's trained 100s of millionaires and helped a Fortune 100 create an empathy video game. He helped launch the world's largest magazine (AARP) and won a patient services award from The ALS Association.   Guest Links: The Influence With A Heart® Book Success Assessment (Will Your Book Actually Work?)  The Influence With A Heart® Book Success Assessment will help you write/finish a high-quality book fast, elevate your business right, and position yourself for 2X-5X-10X more money and impact. It's a “strategic litmus test” whether you're starting, in the middle, or almost done with your book. Going through this quick assessment will help you maximize what's working — and refine what you want to improve — so you can create more income, influence, and impact. You will discover how to stand out and serve your people in a more powerful, positive, and profound way by writing an unforgettable book!     About Salesology®: Conversations with Sales Leaders Download your free gift, The Salesology® Vault. The vault is packed full of free gifts from sales leaders, sales experts, marketing gurus and revenue generation experts.  Download your free gift, 81 Tools to Grow Your Sales & Your Business Faster, More Easily & More Profitably. Save hours of work tracking down the right prospecting and sales resources and/or digital tools that every business owner and salesperson needs. Watch the demo of the Salesology® Prospecting Method, A Simple, 3-Step Method That, On Average, Increases Qualified Appointments & Sales By 73%. If you are a business owner or sales manager with an underperforming sales team, let's talk. Click here to schedule a time. Please, subscribe to Salesology®: Conversations with Sales Leaders so that you don't miss a single episode, and while you're at it, won't you take a moment to write a short review and rate our show? It would be greatly appreciated! To learn more about our previous guests, listen to past episodes, and get to know your host, go to https://podcast.gosalesology.com/ and connect on LinkedIn and follow us on Facebook and Twitter and check out our website at  http://www.gosalesology.

Steve Stack is back with another episode of AHA! Today on American Hardwood Advisor, Chris Filardi, Managing Partner & Co-Creator of Outdoor Channel's Renovation Hunters, talks with Steve about how Renovation Hunters came to partner with the ALS Association.  Listen in and hear the unlikely story of how a project on Renovation Hunters Season 2 led to them learning all about ALS and the havoc it wreaks on individuals and their families. Check out Baird's content studio for more interviews with the personalities from the Outdoor Channel's Renovation Hunters — even some before & after videos filmed on-site at the projects!  Brought to you direct from Studio 3B at Baird Brothers Fine Hardwoods, the American Hardwood Advisor is your source for trends, tips, and insights into how the building industry has evolved. Join Steve Stack, along with guest builders and industry leaders, as they talk shop on what it takes to be the best of the best. Subscribe to our channel to stay up-to-date on the latest content on hardwood products, tutorials, tips & tricks, and interviews. Browse and buy online: www.BairdBrothers.com  ORDERED easily. DELIVERED conveniently. ENJOYED comfortably.

In this episode of  ""I'm Dying To Tell You,"" I meet up with the resilient Sara Bennett, from Columbus, Ohio.  At just 36 years old, Sara was confronted with a devastating diagnosis: ALS.  In a candid and deeply moving conversation, Sara opens up about her extraordinary journey, bravely navigating the intricate balance of life as a mother to two young sons, aged 5 and 7, while grappling with the harsh reality of a terminal illness. With unwavering courage, Sara shares her poignant insights, offering listeners a profound glimpse into the resilience of the human spirit in the face of unimaginable challenges.  Sara shares how she told her young boys about her diagnosis and how she is navigating parenthood in this new season.  Sara also shares how she is working with a death doula to assist her with end-of-life.  This episode is a reminder of the indomitable strength found within us all.  Follow Sara:  https://www.instagram.com/theanandapivot/Thank you for listening in.  Hugs, LorriI am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In hour number two former MLB pitcher Mike Boddicker joins the guys in studio as he voices his thoughts on the early work being done by the Royals pitching staff and his thoughts on Cole Regans.  SSJ also talks about the event him and Mike did last weekend together for The ALS Association.See omnystudio.com/listener for privacy information.

Karen McClaflin is the Executive Director of the California Automobile Museum in Sacramento, California. A California native she was the Executive Direcgro of the ALS Association and the California Automobile  Museum from 2006 – 2015 before focusing on Development at Broadway Sacramento before returning for a second term. I had the pleasure of visiting the California Automobile  Museum in 2018 when I filmed an episode of Cars Yeah TV that you can enjoy on the Cars Yeah YouTube channel.

From the reigning National Championship winning Quinnipiac Bobcats, the set up man on the iconic overtime goal, Sam Lipkin joins Drop the Mitts for Episode 34. Sam talks about the goal and what he saw on the play along with Jacob Quillan's iconic celly hitting the Selanne with the stick toss in the stands. Sam talks about playing for legendary Head Coach Rand Pecknold and what he has meant to Quinnipiac as well as the chemistry he has with teammates Collin Graf and Jacob Quillan. With some of the most passionate fans in College Hockey Sam describes what its like playing in front of the Quinnipiac faithful. He also talks about his time with the Chicago Steel and the honor he had being able to wear the "C" as well as playing with guys like Owen Power, Adam Fantilli and Matt Coronato to name just a few. Later in the episode Chris talks about the first big trade to happen in the NHL where Chris Tanev was sent to the Dallas Stars. Was this an overpay? Chris also disects the new PWHL Playoff and Draft format which seemed to be a hit. Chris talks about the hot start Dallas Stars rookie Logan Stankoven is off. On a sad note Chris talks about the passing of Kenneth Mitchell who played the iconic role of Ralph Cox in Miracle who passed away Saturday after a long battle with ALS. Please consider donating to the ALS Association to help combat this horrible disease. As always if you enjoyed Drop the Mitts Hockey content please don't hesitate to leave a 5 star review and follow Chris Davis @chrisjdavis11 on all social media platforms as well as the podcast account @DropMittsHockey on all social media platforms. 

In hour number two former MLB pitcher Mike Boddicker joins the guys in studio as he voices his thoughts on the early work being done by the Royals pitching staff.  SSJ also talks about an event him and Mike are doing together for The ALS Association this weekend. See omnystudio.com/listener for privacy information.

In this episode I chat with Juliet Taylor & Tim Abeska who each lost spouse to ALS. They met in a virtual support group for widow & widowers.   Realizing they lived in the same area and had common interests, they met for coffee and their relationship grew from there.  Today they encourage each other to love & honor their late spouse, enjoy life and be active ALS advocates to help end ALS.   Here, Juliet & Tim share about their late spouses, Jeff Sarnacki & Mary Ann Abeska.  We talk about how they are supporting each other's grief journey and what advice they have for others who are experiencing loss.  It's incredible that both Juliet & Tim have jumped back in to the ALS community as key advocates.  Together, they are the co-chairs of the I AM ALS Community Outreach Team, which helps bring others into our fight for a cure.  Juliet writes a beautiful column for ALS News Today. Listen in to this hopeful chat and share with a friend.  Thanks for listening.  Hugs, Lorri I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we'll be revisiting impactful past episodes that continue to resonate with the ALS community.In this episode, from May 25th of 2023, Jeremy spoke with Leslie Ryan, Senior Director of Education and Professional Competencies at The ALS Association about the new My ALS Journey tool, a web-based platform that provides personalized guidance and support to people living with ALS.

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we'll be revisiting impactful past episodes that continue to resonate with the ALS community.  In this episode, which originally aired on June 9th, 2022, Jeremy talks to Dr. Neil Thakur, Chief Mission Officer at The ALS Association, and Melanie Lendnal, the Association's senior vice president of policy and advocacy, about the role of advocacy, and how's it's central to the fight for improving the lives of people living with ALS.

Here you'll meet Tony and Karen Vick.  Tony, a brave U.S. Veteran, has been living with ALS for the past 6 years.  Karen, his dedicated wife, serves as his full-time caregiver, showcasing the strength of their bond.  Despite facing the challenges of ALS, Tony and Karen lead a fulfilling life and share their journey on Karen's Instagram account, https://www.instagram.com/thekaregiver/.  After realizing how many young caregivers are out there, they decided to share more on the day-to-day realities, triumphs, and tribulations of living with ALS.  They hope to help other caregivers and individuals grappling with illnesses like ALS.  Tune in to discover how they extend their reach and provide support through their engaging weekly LIVE sessions on Instagram @thekaregiver, where they update their journey, answer questions, and offer encouragement.  Both Tony & Karen are returning guests on this podcast.  We get an update on how Tony is doing and his thoughts on his positive perspective.  Tony also shares advice for other veterans living with ALS.  Listen in as I delve into the inspiring story of Tony and Karen Vick, demonstrating that even in the face of adversity, love, resilience, and community can thrive.  Thank you for listening in and sharing with a friend.  Hugs, LorriI am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

We have a special treat for you today! Erin interviewed Renee Hetzler, PT, DPT, NCS and Bernadette Cummings, OTR/L, ATP who both specialize in working with people with ALS to have a conversation about caring for individuals with ALS. There are do's and don'ts when working with this population and we wanted to bring it to you! If you're someone who doesn't see this population very often and you want to know what to focus on, the timeline of events you should be tuned into and how to prioritize your plan of care, this is the episode for you!   Some of the topics discussed include: The types of ALS, initial symptoms, warnings signs and timeline Outcome measures and assessments to consider How to be prepared based on the timeline How to have conversations with the patients and their families Favorite equipment recommendations from PT and OT Exercise recommendations Resources for individuals with ALS and their families  ALS Association: https://www.als.org/ Team Gleason: https://teamgleason.org/ Muscular Dystrophy Association: https://www.mda.org/  I AM ALS: https://iamals.org/ Compassionate Care ALS: https://ccals.org/ https://shower-buddy.com/ https://razdesigninc.com/ https://www.fawssit.com/ https://www.etac.com/en-us/us/products/patient-handling/slings/molift-rgosling-toilet-highback/ https://www.performancehealth.com/air-soft-resting-hand-splint https://www.performancehealth.com/rolyan-adjustable-wire-frame-cervical-collar#sin=35206 https://www.amazon.com/DRIVE-Rollator-Walker-Removable-Storage/dp/B07TCTBLD9/ref=cm_cr_arp_d_product_top?ie=UTF8 https://kineticresearch.com/product/the-noodle-classic-afo/ https://www.amazon.com/Medline-Lightweight-Transport-Wheelchair-Handbrakes/dp/B007WA1ZG4 And no need to take notes, we've got an info sheet with everything that was covered for you to download HERE

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we'll be revisiting impactful past episodes that continue to resonate with the ALS community.In this episode, which first aired on April 15th 2021, Sandra Sullivan, The ALS Association's Director of Chapter Communications, talks to Sarah Trott, a former contestant on The Bachelor, about her connection to ALS and her work trying to support and connect young caregivers like herself around the country.

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we'll be revisiting impactful past episodes that continue to resonate with the ALS community.In today's episode, which first aired on Nov 4 2021, Jeremy celebrates Family Caregivers' Month with guest co-host Steve Becvar, who is  the executive director of The ALS Association's Greater San Diego Chapter. They speak with  Ann Larson, who was caregiver to her husband during his fight against ALS, and Jennifer Meyer, care services coordinator at The ALS Association MN/ND/SD Chapter.

Episode 152: ALS FundamentalsFuture Dr. Rodriguez explains the symptoms of ALS, including UMN and LMN symptoms. Dr. Arreaza discusses the principles of symptomatic treatment by primary care. This is a brief introduction to ALS.  Written by Adraina Rodriguez, MSIV, Ross University School of Medicine.  You are listening to Rio Bravo qWeek Podcast, your weekly dose of knowledge brought to you by the Rio Bravo Family Medicine Residency Program from Bakersfield, California, a UCLA-affiliated program sponsored by Clinica Sierra Vista, Let Us Be Your Healthcare Home. This podcast was created for educational purposes only. Visit your primary care provider for additional medical advice.Arreaza: It is rare but you may encounter it and you should be able to identify the most common symptoms. ALS Challenge in 2014: Ice bucket challenge. Adriana: Patrick Quinn was an ALS patient and activist who created the ICE Bicket Challenge and helped raise US$220 million for medical research.Arreaza: What is ALS?Adriana: ALS stands for Amyotrophic Lateral Sclerosis, formerly known as Lou Gehrig's Disease. It is the most common form of acquired motor neuron disease. ALS is a progressive, incurable neurodegenerative motor neuron disorder with Upper motor neuron (UMN) and/or Lower motor neuron symptoms that cause muscle weakness, disability, and eventually death. There is no single diagnostic test that can confirm or entirely exclude the diagnosis of motor neuron disease. Arreaza: When should you suspect ALS in a patient?Adriana: The classic patient presentation is insidious, slowly progressive, and unremitting UMN and/or LMN symptoms present in one of four body segments - cranial/bulbar, cervical, thoracic, and lumbosacral - followed by spread to other segments over a period of months to years. Arreaza: What would you see on the physical exam when the Patient is in the clinic? There is a system to send signals from your brain to your muscles. It involves basically two neurons: Upper and lower motor neurons. The UMN goes from your cerebral cortex to your spinal cord and there it connects to a lower motor neuron through synapsis. The LMN then sends the signal to your muscles, causing contraction or relaxation. Tell us about the UMN and LMN symptoms.Adriana:LMN Symptoms: Weakness, Fasciculations, Muscular atrophy, Decreased muscle tone (flaccidity) and reduced or absent reflexes. UMN Symptoms: Increased tone and increased extremity deep-tendon reflexes, presence of any reflexes in muscles that are profoundly weak and wasted, pathological reflexes (crossed adductors, jaw jerk, Hoffman sign, Babinski sign 50%), syndrome of pseudobulbar affect (inappropriate laughing, crying, forced yawning).Arreaza: What are important factors to help narrow your differential to ALS?Multifocal motor neuropathy, cervical radiculomyelopathy, benign fasciculations, inflammatory myopathies, post-polio syndrome, monomelic amyotrophy, hereditary spastic paraplegia, spinobulbar muscular atrophy, myasthenia gravis, hyperthyroidism, and many others.There are pertinent negatives to look out for: Usually negative neuropathic or radiculopathic pain, sensory loss, sphincter dysfunction, ptosis, or extraocular muscle dysfunction (20-30% positive sensory symptoms or “pins and needles” and “electricity” in the affected limbs).Note: Cognitive dysfunction does not exclude ALSArreaza: What are the diagnostic criteria for ALSAdriana: Gold Coast Criteria 2019 proposed over El Escorial criteria:Progressive upper and lower motor neuron symptoms and signs in one limb or body segment, ORProgressive lower motor neuron symptoms and signs in at least two body segments, ANDAbsence of electrophysiologic, neuroimaging, and pathologic evidence of other disease processes that might explain the signs of lower and/or upper motor neuron degeneration.Arreaza: What diagnostic tests should be ordered for further evaluation?Adriana: Electrodiagnostic studies: Electromyogram and nerve conduction studies (EMG and NCS)Laboratory testing: creatine phosphokinase up to 1000u/LNeuroimaging: to exclude other causes mainly. Brain MRI whenever bulbar disease is present. Cervical and lumbosacral spine MRI for LMN findings in the arms and legs.Genetic testing: FALS 10% of ALS defect in C9ORF72 gene that makes motor neuron and brain nerve cell protein, the exact cause is unknown. Arreaza: Finally, how do you treat ALS?Adriana: Disease-modifying treatment: Riluzole is recommended for all patients with ALS. Shown to prolong survival and slow functional deterioration. The mechanisms of action that reduce glutamate-induced excitotoxicity: 1) inhibit glutamic acid release, 2) non-competitive block of N-methyl-D-aspartate (NMDA) receptor-mediated responses, 3) direct action on the voltage-dependent sodium channel. Arreaza: Riluzole is given 50 mg by mouth twice a day. It may cause drowsiness or somnolence, hepatic injury: Not recommended for patients with elevation of transaminases >5 times the upper limit of normal. It is recommended to monitor for hepatic injury and discontinue if there is evidence of liver dysfunction, such as hyperbilirubinemia.Adriana: Symptom-based management is the mainstay of treatment. You may involve a multidisciplinary team to treat the symptoms. For example: palliative, hospice, respiratory function management (Noninvasive Positive Pressure Ventilation vs mechanical ventilation.Arreaza: PCPs may be in charge of managing symptoms because you are the closest provider to the patient. Wherever available, it is recommended to refer your ALS patients to a specialized center. Many patients do not have availability to an ALS center or a neurologist, but they have you to manage their symptoms or complications.Adriana: Dysphagia: It is a common and distressing symptom. It is suggested PEG tube placement for patients with ALS with normal or moderate respiratory function who have dysphagia. It is controversial, some studies found no benefit on survival or quality of life and other studies suggest that it is safe to give a high-carb, hypercaloric diet to ALS patients. Arreaza: Spasticity: Use medications such as baclofen and tizanidine may be helpful, and botulinum injections are an option for those who are not responding to oral muscle relaxants. Adriana: Sialorrhea: Use medications such as atropine, hyoscyamine, amitriptyline, and scopolamine. If these medications are not effective or tolerated, used botox injections into the salivary glands. It is considered safe and useful for treating sialorrhea in patients with ALS. Botox is not only for wrinkles!Arreaza: There are many other symptoms that will require management, but you are invited to review your preferred source of information such as Up to Date, AAFP, or the ALS Association website. ______________________________Conclusion: Now we conclude episode number 152, “ALS Fundamentals.” You heard from future Dr. Rodriguez that ALS can present with upper motor neuron symptoms, such as spastic muscles and hyperreflexia; or lower motor neuron symptoms, such as flaccid and weak muscles. Some other symptoms include dysphagia, shortness of breath, difficulty talking, fatigue, thick mucus, and pseudobulbar affect. Dr. Arreaza explained that primary care physicians are in a special situation to help diagnose and treat the symptoms of ALS, especially in communities with limited access to an ALS center. You may need to involve a multidisciplinary team to improve the quality of life and possibly the survival of ALS patients. This week we thank Hector Arreaza and Adriana Rodiguez. Audio editing by Adrianne Silva.Even without trying, every night you go to bed a little wiser. Thanks for listening to Rio Bravo qWeek Podcast. We want to hear from you, send us an email at RioBravoqWeek@clinicasierravista.org, or visit our website riobravofmrp.org/qweek. See you next week! _____________________References:Galvez-Jimenez, Nestor and Colin Quinn, Symptom-based management of amyotrophic lateral sclerosis, Up To Date, updated on July 31, 2023. https://www.uptodate.com/contents/symptom-based-management-of-amyotrophic-lateral-sclerosis. Royalty-free music used for this episode: Good Vibes: Sky's The limit, downloaded on July 20, 2023 from https://www.videvo.net/ 

Here I chat with military veteran of both the U.S. Marine Corps and the U.S. Navy, Kate Peters.  She served in the USMC 2007-2015, USN 2015-2020 and served in Operation Iraqi Freedom.   Kate is a mother of two boys, three and five and was medically retired from the military after being diagnosed with ALS, a fatal disease that has no cure.    She was diagnosed with ALS in 2020 a few weeks after her second son was born, after about 2 and 1/2 years of symptoms and a misdiagnosis.   I talk to Kate about her military experience, the connection between ALS & the military and her upcoming BIG adventure of traveling the world for a year with her young family.  Kate is considered a slow progresser with ALS, having symptoms for almost 6 years and still being fully independent and able to take care of her children.   She's been able to witness some blessings after being given a terminal diagnosis and shares some beautiful life advice that will encourage us all.   Thank you for listening in and sharing with a friend.  Hugs, LorriFollow:  https://bit.ly/ImDyingToTellYouInstagram  

For over 40 years, she's been a key member of The Young & the Restless. You know her as "Esther Valentine", Katherine Chancellor's housekeeper. In 2008, she received a star on the Hollywood Walk of Fame. She never quit her pre-Young & the Restless weekend job as a flight attendant for United Airlines because she said it helps "keep her grounded". In 2005, she was named the celebrity spokesperson for the ALS Association. Kate devotes her time to her work and multiple charities such as the March of Dimes, the Lupus Foundation, Los Angeles Mission, and many other charities. A huge thank you to Kate for taking the time to speak with me on the SEE THE UNSEEN Podcast in hopes that in some way it will help others.

This week, Jeremy welcomes Kathleen Sheehan, Vice President of Public Policy at The ALS Association, for an update on the National Academies of Sciences, Engineering, and Medicine Committee's action plan to make ALS livable and to accelerate the search for treatments. Learn more about the NAS working group at https://www.nationalacademies.org/our-work/amyotrophic-lateral-sclerosis-accelerating-treatments-and-improving-quality-of-lifeThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This episode is just me answering YOUR questions.  I had a lot of requests for this format again, so I asked listeners to send in questions about anything and I answered them here.  I'm so grateful for all the questions that came in, about life, perspective, my ALS longevity, family and advice.  I love that my listeners feel comfortable asking me anything.  This was a super special experience.  I hope you enjoy and share with a friend.Connect: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en and https://twitter.com/LorrisPodcast

This week, Jeremy talks to Dr. Kelly Gwathmey, Chair of Neuromuscular Neurology at Virginia Commonwealth University, about recent research showing racial disparities in the time it takes to confirm an ALS diagnosis.Learn more about the research conducted at VCU at https://www.sciencedirect.com/science/article/pii/S0022510X20303919 For more information about the importance of a timely diagnosis, go to https://www.als.org/thinkals/benefits-timely-diagnosisThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy kicks off National Wellness Month with Melissa Enfinger from The ALS Association's Care Services team. To participate in research into the mental health and wellness needs of people living with ALS, go to https://milwaukee.qualtrics.com/jfe/form/SV_4I9CXsunR8LrTYaThis episode is brought to you by The ALS Association in partnership with CitizenRacecar. 

This week, Jeremy catches up with Brooke Eby, a social media influencer living with ALS, about her efforts to raise awareness of ALS and critical funding for ALS research, and how she uses levity and humor along the way. Find ways to follow Brooke's journey at https://hoo.be/limpbroozkit Check out Brooke's appearance on Today at https://www.today.com/video/meet-the-woman-facing-als-with-heart-and-humor-174780997741 Listen to Brooke's conversation with Lorri Carey at https://imdyingtotellyoupodcast.com/uncategorized/fighting-als-with-humor-brooke-eby/ To learn more about August Advocacy Action Month go to https://www.als.org/advocacy/action-centerThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Here I continue my talk with Amy, Jim and Matt who are living with ALS about having the toughest conversations of their lives.  When you're living with a terminal illness that doesn't have a cure and typically gives you just a few years to live, like ALS, the most difficult conversations come up quick.  In this Part 2 episode, I continue chatting with  Amy Stiens, Jim Plews-Ogan and Matt Klingenberg.  I am grateful for their willingness to chat about how they were told they had a terminal illness with no cure, how they told their children and friends and even the toughest conversations yet.  Amy, Jim & Matt share their advice on how to go about having "tough talks" like these as well.  Thanks for listening in and sharing with a friend.  Hugs, Lorri  

This week, Jeremy explores some of the ongoing fights to make insurance work more effectively for people living with ALS. He is joined by Shannon Todd from The ALS Association's Care Services team and ALS advocate Katie Adams, who updates us on her ongoing fight for insurance coverage of her power wheelchair. Learn more about Katie Adams's story at https://www.als.org/blog/katie-adams-fighting-change-everyone-als Read about the support available to help navigate insurance barriers at https://www.als.org/blog/katie-adams-fighting-change-everyone-als For more information on the ways insurers erect barriers to access at https://www.als.org/blog/breaking-barriers-fight-make-health-care-affordable-and-accessibleThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy explores some of the barriers insurers establish that make it difficult to use insurance for essential health care needs, and talks to Kara Nett Hinkley, National Vice President of State Advocacy at The ALS Association, about some of the work being done to break down those barriers. Learn more about the ALS Focus results at https://www.als.org/research/als-focus/survey-results/survey-6-results Become an advocate at https://als.quorum.us/sign_in/This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

When you're living with a terminal illness that doesn't have a cure and typically gives you just a few years to live, like ALS, the most difficult conversations come up quick. In this episode, I bring together 3 others who are living with ALS to talk about their experiences with these tough conversations.  Here, I'm talking to Amy Stiens, Jim Plews-Ogan and Matt Klingenberg.  I am grateful for their willingness to chat about how they were told they had a terminal illness with no cure, how they told their children and friends and even the toughest conversations yet.  Amy, Jim & Matt share their advice on how to go about having "tough talks" like these as well.  Thanks for listening in and sharing with a friend.  Hugs, Lorri  Stay connected on Instagram: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en  

This week, Jeremy reflects on some recent news in the ALS community and looks back on a discussion of the challenges of traveling while living with ALS. Read the National Geographic article on the ALS Ice Bucket Challenge at https://www.nationalgeographic.com/science/article/als-ice-bucket-challenge-research-impact Find the New Yorker article (password required) on the FDA's path to approving AMX0035 at https://www.newyorker.com/magazine/2023/06/26/relyvrio-als-fda-approval Learn more about The ALS Association's new research grant programs at https://www.als.org/stories-news/new-grants-seek-optimize-als-care-and-improve-quality-life

This week, Jeremy talks to Calaneet Balas, President and CEO of The ALS Association and Chair of the International Alliance of ALS/MND Association, about the state of the global fight against ALS. Learn more about the fundamental rights of people living with ALS/MND at https://www.als-mnd.org/support-for-pals-cals/pals-and-cals-rights/This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, we look at the latest headlines in the fight against ALS and commemorate Juneteenth by looking back on a discussion of racial disparities in ALS. Read the inspiring story of Matt and Laurel Cluthe at https://alstexas.org/als-legacy-and-baseball-the-cluthe-family-story/Urge your congressmen to support the Justice for ALS Veterans Act at https://als.quorum.us/campaign/48277/Learn more about Lou Gehrig Day 2023 at https://www.als.org/blog/als-community-and-major-league-baseball-come-together-celebrate-lou-gehrig-dayThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy welcomes back Dr. Melinda Kavanaugh to learn about the Global Neuro YCare Foundation and efforts to support young caregivers around the world. Find resources to support young caregivers at https://www.als.org/navigating-als/resources/Youth-Education Read about Dr. Kavanaugh's work to bring YCare to South Africa at https://www.als.org/blog/als-around-globe-help-young-caregivers-south-africaThis episode is brought to you by The ALS Association in partnership with CitizenRacecar. 

It was a packed third hour of the show this morning on Sports Radio 810. We started things off by talking about Lou Gehrig night at Kauffman Stadium - George Brett and Colleen from the ALS Association joined to talk about what all will be going on this weekend as they team up with the Royals to continue the fight against ALS. Then, we visited with our favorite lawyer Mike DiPasquale as he gives Nate some advice about a close call interaction on the highway. And we close things out with former Royals catcher Mike Macfarlane as we preview the home series against the RockiesSee omnystudio.com/listener for privacy information.

This week, Jeremy talks to Leslie Ryan, Senior Director of Education and Professional Competencies at The ALS Association about the new My ALS Journey tool, a web-based platform that provides personalized guidance and support to people living with ALS. Learn more about My ALS Journey at www.alsjourney.org.This episode is brought to you by The ALS Association in partnership with CitizenRacecar. 

This week, Jeremy is joined by the co-directors of the UC Davis Neuroprosthetics Lab, Dr. Sergey Stavisky and Dr. David Brandman, to learn more about their research testing the feasibility of intracortical Brain Computer Interface technology to restore speech. Learn more about The ALS Association's Seed Grant Program at https://www.als.org/stories-news/new-seed-grant-program-seeks-support-exploratory-als-research For more information on research into using iCBIs to restore speech and trial participant criteria, go to https://www.ucdavis.edu/news/clinical-trial-aims-develop-new-methods-restore-speech-brain-computer-interfaceThis episode is brought to you by The ALS Association in partnership with CitizenRacecar. 

In this special Q&A episode, 3 young adults answer questions you sent in about ALS and living with a terminal illness.  May is ALS Awareness month.  So in the spirit of increasing awareness of ALS, a terminal illness with no cure, I chatted with 3 others living with ALS.  We answer the questions sent in by listeners of this podcast about what it's like being a young adult and living with a terminal illness.  My guests, Ashley Rivera and Mira Hudson were diagnosed at 24 and James Smith was diagnosed at 36.  They dig deep and open their hearts to answer your questions like, "Can you share about the moment you were diagnosed with ALS?"  "How do you find the strength day in and out to persevere and overcome fears, pain, negative emotions, etc.? "  "What's important now that wasn't before your diagnosis?"  "What makes you feel inspired or like your best self now?"  and "How are you dealing with the mental side of living with ALS."  Those are a few examples of questions they answer and generate a full conversation around.  Please consider sharing this episode to share their courageous spirits and to tell others about ALS.  Thank you. Hugs, Lorri  

#188: What would you do if God told you to leave the mastermind groups you're in and just follow His direction for your business?This is the exact situation that our guest today encountered and like a lot of us type A personalities, this was difficult to follow at the beginning, however what happened next is amazing! In this video, we dive into releasing that control over your business and inviting God into it and how God is the ultimate business coach who doesn't need us to prove ourselves to Him, He loves us regardless and unconditionally. Mary Valloni is a highly accomplished nonprofit coach, consultant, author and speaker with a successful track record of helping organizations get started, achieve their financial goals, and make a positive impact in their communities. With over two decades of experience in the nonprofit sector, Mary has worked with over a thousand clients, providing strategic advice and expert guidance on a variety of issues including program development, fundraising, and organizational effectiveness. Prior to her current work, Mary held senior positions at several leading nonprofit organizations including the American Cancer Society, Special Olympics and the ALS Association where she raised over $4 million and gained a wealth of experience in the field. Today, Mary is the award-winning author of the book, Fundraising Freedom, co-founder of Start and Grow Your Nonprofit, co-founder of Fully Funded Academy, and the host of the Fully Funded Podcast. Mary lives in St. Louis, Missouri with her husband, their daughter, and their two Dalmatians.This episode is part of our Easter Christian Business Series, stay tuned for the next episode. :)Listen to Mary's Story...[03:55] - What was 1 turning point that God inspired or instructed to do something differently?[05:24] - What was the result of that?[09:56] - What advice would she give those who have heard from the Lord, but are afraid to let go of those communities? [12:09] - Common mistake for entrepreneurs and a reminder of God's unconditional love for usImportant Links & Mentions in this episode:Mary's WebsiteMary's Book: Fundraising FreedomMary's PodcastSheInherited Founders AcademyKelly's 4D Breakthrough DevotionalKelly's Youtube ChannelPower of One Framework MasterclassSubscribe + Review on iTunesSubscribe + Listen on Spotify Remember, YOU Matter! See you in the next episode.

Here I talk to someone who has  ALS for over 25 years.  I reconnect with a former colleague from Kraft Nabisco, John Carthum.  It was a few decades ago when I heard John left the company for medical reasons.  I never knew what hand he was dealt that made him have to leave his career at such a young age until I was diagnosed with ALS in 2004.  That's when I learned that it was also ALS that John was diagnosed with in 1995.  Now he is outliving the typical 2 to 5 year death sentence that comes with ALS, also known as Lou Gehrig's Disease.  It's incredible that John has been living with ALS for 27 years now. I am so grateful that John decided to take me up on my invitation to chat for this episode.  I knew his precious insights would be a blessing to many.  Listen in and hear John share what it has been like living with a terminal illness with no cure for such a long time, how he and his wife decided to have children after his diagnosis and what keeps him living life to the fullest while struggling every single day.  Thanks for listening in and sharing with a friend.  Hugs, LorriStay Connected:Instagram: https://www.instagram.com/imdyingtotellyoupodcast/?hl=enFacebook:  https://www.facebook.com/ImDyingToTellYouPodcast/ Connect more: http://www.ImDyingToTellYouPodcast.com