Podcasts about Muscular Dystrophy Association

This Saturday, Vancouver firefighters will once again take to the streets — or parking lots — to ask community members to Fill The Boot in support of the Muscular Dystrophy Association. With more than 70 years of tradition, this fundraiser supports vital research, care, and advocacy for those with neuromuscular disease. https://www.clarkcountytoday.com/news/firefighters-asking-folks-to-fill-the-boot-with-fundraiser-for-mda-on-saturday/ #FillTheBoot #MDA #VancouverWA #Firefighters #CommunitySupport #FredMeyer #MuscularDystrophy #Fundraiser #ClarkCountyToday #IAFF

Welcome to another episode of the Milwaukee Sports Performance Podcast! Join us as we chat with Caty, the head coach at Burn Boot Camp Oconomowoc. Learn about Burn's philosophy of blending strength, cardio, and conditioning into 45-minute workouts that empower people of all ages and fitness levels. Caty shares her personal fitness journey, the importance of functional training, and how Burn Boot Camp creates a supportive community. Additionally, get the details on their upcoming charity event, 'The Hardest Mile,' supporting the Muscular Dystrophy Association. Don't miss this inspiring conversation! 00:00 Introduction and Guest Welcome 00:25 Caty's Background and Journey with Burn Boot Camp 02:47 Training Philosophy and Class Structure at Burn Boot Camp 04:45 Importance of Strength Training and Longevity 10:06 Community and Personal Stories 16:55 Upcoming Charity Event: The Hardest Mile 21:11 How to Get Involved and Final Thoughts Links: Hardest Mile Sign Up: https://www.eventbrite.com/e/the-hardest-mile-tickets-1264337380139?aff=oddtdtcreator Burn Boot Camp Oconomowac Instagram: https://www.instagram.com/burnbootcampocon/?hl=en

Susanna Doyle from MDA talks about her approach to connecting and communicating with nonprofit donors.

Sarah Levin has always felt called both to serve others, and to work in the medical field. It's been her dream to combine both, and she's been able to do that in her 18-year career at the Muscular Dystrophy Association. In her role as National Vice President of Community Events, Levin serves with the #1 voluntary health organization in the United States for people living with neuromuscular diseases. This covers not only more than 10 types of muscular dystrophies, but motor neuron diseases including ALS, ion channel diseases, mitochondrial diseases, myopathies, neuromuscular diseases, peripheral nerve diseases and more. Visit their website at https://www.mda.org/disease/list to learn more. The services MDA offers are for those diagnosed, their families, and for researchers in the constant search for ways to combat the diseases and their symptoms. Click here to learn more about the Muscular Dystrophy Association: https://www.mda.org/ Original air date: December 5, 2024.See omnystudio.com/listener for privacy information.

In this episode, Shirley Robinson, CAE, executive director of the Texas Library Association (TLA), joins hosts Steven Stout, FASAE, CAE, and Katy Markert to share her inspiring journey in the association world and advocacy efforts of Texas associations. From her early ambition of becoming an optometrist to discovering her passion for nonprofit work with the Muscular Dystrophy Association, Shirley reflects on the experiences and lessons that led her to leadership at TLA. Shirley discusses the critical skills needed to be a successful executive director, including budgeting, public speaking, and maintaining a healthy work-life balance. She also dives into the impactful work TLA is doing to support libraries across Texas, tackling issues like censorship, securing funding, and improving broadband access in rural communities. With a membership of over 6,000, TLA is dedicated to strategic planning, engaging volunteers, and legislative advocacy to champion the essential role of libraries. This episode offers a fascinating look at leadership, advocacy, and the future of library services in Texas. This episode is sponsored by Sweeney Associates. Better By Association is produced by Association Briefings.

Navigating the Hospitality Staffing LandscapeIn a recent episode of "The Thoughtful Entrepreneur," host Josh delves into the intricacies of the hospitality staffing industry with Kathleen Hurtubise, the CEO and founder of Aloha Hospitality Professionals (Aloha HP). Based in Hawaii, Aloha HP specializes in staffing for the hospitality, light industrial, and administrative sectors. Kathleen shares her unique approach to recruitment, the importance of soft skills, and innovative strategies to connect job seekers with employers. This blog post will break down the key takeaways from their conversation, offering actionable advice for business leaders in the hospitality industry and beyond.Kathleen highlights the pressing need for workers in the hospitality industry, where many companies struggle to find qualified candidates despite a large pool of potential employees. One of the standout strategies discussed is the concept of "exposure ships." This innovative approach involves organizing events where high school seniors can volunteer and gain exposure to various businesses. For example, at a recent festival in Hawaii that attracted 70,000 attendees, Aloha HP coordinated hundreds of high school seniors to volunteer. This allowed students to showcase their work ethic and skills in real-time to potential employers, creating a unique opportunity for both parties.Kathleen emphasizes the importance of soft skills, which she refers to as "beingness." Employers are increasingly looking for candidates who not only possess the necessary technical skills but also demonstrate qualities such as integrity, teamwork, and a genuine care for their work. Aloha HP has developed a set of "ten golden rules of aloha" that guide their hiring process. These rules emphasize the importance of showing up on time, being a team player, and having a strong work ethic. Kathleen asserts that organizations often get what they tolerate. If they accept mediocrity, that is what they will receive. At Aloha HP, there is a strong emphasis on punctuality and accountability. Employees are expected to arrive 15 minutes early for their shifts, reinforcing the idea that showing up on time is a fundamental aspect of professionalism.About Kathleen Hurtubise:An innovative force in the staffing and events management industries, Kathleen Lin-Hurtubise is the founder & president of Gourmet Events Hawaii (GEH), an award-winning full-service production, catering, and event management company, and Aloha Hospitality Professionals (AlohaHP), the first full-service staffing agency in Hawai'i dedicated to temporary and permanent placements in hospitality, entry-level administration, and light industrial work, as well as day labor support for caterers, stadiums, and venues. As a businesswoman and yogini, Lin-Hurtubise is committed to providing #BestSelfThroughService, ensuring that the company's temp team members are reliable and genuinely care about their work. Prior to founding GEH and AlohaHP, Lin-Hurtubise served as the Field Office Director in Massachusetts, Alaska, and finally Hawaii, where she recruited and developed thousands of staff who mobilized communities around environmental and consumer issues. She also served as the Hawaii Director of the Muscular Dystrophy Association. She received her master's degree in political science and government from the University of Hawai'i at Mānoa.

Home chef, Chicago’s Very Own Eats podcast All-Star, and Muscular Dystrophy Association ambassador Billy Zureikat brought football and pizza fans together with his weekly ‘Chicago Squares’ series last year. Every week, he created a new tavern style pizza with ingredients inspired by the Bears’ opponents. If you followed the Chicago Squares series last year and […]

Bart Conner is the most accomplished male gymnast America has ever produced. He is the only American gymnast to win gold medals at every level of national and international competition.Bart was a member of the gold medal-winning men's gymnastics team at the 1984 Summer Olympic Games and won an individual gold on the parallel bars. He was also part of the 1976 and 1980 USA Olympic gymnastics teams.Conner is a graduate of the University of Oklahoma and owns and operates the Bart Conner Gymnastics Academy in Norman, Oklahoma along with his wife, Romanian gold medalist Nadia Comaneci.Bart and Nadia are longtime supporters of the Muscular Dystrophy Association and Special Olympics.

Fred Shelfer has been the CEO of Goodwill Industries - Big Bend, Inc. since 2002. He has an extensive business background as the developer of residential and commercial properties in Tallahassee, Panama City, and the surrounding areas. He still holds his insurance license (fire, casualty, life, health annuities) as well as his real estate broker's license.Fred is a past Chairman of the Muscular Dystrophy Association, past President of GIBB Inc. (developers and owners of apartments for people with disabilities and the elderly) and Lay leader and Chairman, Administrative Council, Pisgah United Methodist Church.In this episode, Blake and Fred discuss Fred's career, the valuable role Goodwill plays in our communities, the importance of serving the community, and much more.Produced by Level Up Digital Media http://www.levelup.media/​​Participants: Blake Dowling, CEO, Aegis Business TechnologiesFred Shelfer, CEO, Goodwill Industries - Big Bend, Inc.WEBSITE - https://www.aegisbiztech.com​​ FACEBOOK - https://facebook.com/aegisbiztech​​INSTAGRAM - https://instagram.com/aegisbiztech​​TWITTER - https://twitter.com/aegissales​​

On this episode of The Association Podcast, we had the privilege of speaking with Morgan Roth, the Chief Marketing Officer of the Muscular Dystrophy Association. Morgan shares her fascinating career journey from broadcasting to the nonprofit sector, emphasizing her personal connection to MDA's mission as she lives with Charcot-Marie-Tooth disease. The discussion highlights significant milestones, such as recent FAA legislation improving air travel accessibility for people with disabilities, the organization's comprehensive roles in research, multidisciplinary care, and advocacy, and their community outreach activities. We also touch on the importance of digital fluency, actionable data, and proactive decision-making in nonprofit leadership. Morgan shares her pride in MDA's achievements and her commitment to supporting and advancing the neuromuscular disease community.

This week my guest is Billy Zureikat, known online as The Real Billy Z. He's a home cook, baker and pizza-maker who's life took an unexpected turn. He went from an active lifestyle, playing basketball and working at ESPN radio, to a challenging 8-year medical journey that resulted in a diagnosis of limb girdle muscular dystrophy 2L.As his body underwent changes, he found solace and a newfound passion in the kitchen. He traded his jersey for an apron, re-focusing his energy on becoming a better home cook and baker. Sandwiches and pizza became his canvas, and from that emerged the "Tripping Billy" pizza. Little did he know, this creation would become a catalyst for raising funds and awareness for the Muscular Dystrophy Association. Teaming up with some of Chicago's best pizzerias and restaurants, he shares his story of reinvention through food. It became a way to show people that even in the face of change, positive things can happen. Over the past few years, he's collaborated with over 50 culinary giants, raising $50,000 for the Muscular Dystrophy Association.   He's been the Illinois Ambassador for the MDA since January of 2022.BILLY ZUREIKATBilly's websiteBilly's Instagram, TikTok and YouTubeDonate to The Muscular Dystrophy AssociationCHEFS WITHOUT RESTAURANTSIf you enjoy the show and would like to support it financially, please check out our Sponsorship page (we get a commission when you use our links).  Get the Chefs Without Restaurants NewsletterChefs Without Restaurants Instagram and ThreadsThe Chefs Without Restaurants Private Facebook GroupChris Spear's personal chef business Perfect Little BitesSPONSOR INFOHeaven Hill Bottled-In-Bond BourbonI'm excited to introduce you to Heaven Hill Bottled-in-Bond bourbon. Heaven Hill Bottled-in-Bond delivers a flavor profile that's unmatched. This bourbon is aged for seven years, three more than required, creating a richer, more sophisticated flavor profile. When you select this premium bottled-in-bond bourbon, Heaven Hill's commitment to excellence is evident in every sip. Available Nationally, look for a bottle of Heaven Hill Bottled-in-Bond at your local store.Heaven Hill reminds you to Think Wisely. Drink Wisely.Support the Show.

Emily Jaenson's motto is “Be so good they won't forget you!” and she lives this motto each day in her work as a keynote speaker for companies and employee resource groups across the US teaching them to empower their confidence, achieve their biggest goals, and use their voice to make a difference for themselves and their communities. Jaenson leads a podcast, Leadership is Female, where she interviews executives so that she and her guests can lead the next generation of leadership forward. The show is in the Top 10% of most followed podcasts worldwide and Top 200 Business podcasts, globally. Emily's 2022 TEDx talk on confidence reached over 3 million views in one year. Emily speaks on the topic of confidence, goal setting, and intention to companies and organizations around the world.  Emily Jaenson grew up in northern Illinois and attended the University of Illinois Urbana-Champaign graduating from the College of Media with a degree in Advertising.  To pursue her dream of working in sports, Jaenson turned down an ad agency offer to intern with the Chicago Bulls ticket department where she sold season and group tickets during the 2005-2006 season. 80 calls a day, hitting the phones, to fill the United Center on game day truly taught her that the fans are the lifeblood of any sports organization and sales is the foundation of any business.  Jaenson went on to work for Muscular Dystrophy Association in Chicago leading fundraising and partnership efforts across events, programs, and partnerships. She later ran a small marketing agency. In 2013 the Reno Aces, a Triple-A Minor League baseball team and affiliate of the Arizona Diamondbacks, came calling where Jaenson grew from sponsorship account executive to Vice President in two years.  In 2016 Jaenson left Reno with her family for Houston where she had a chance to volunteer for Super Bowl 51, worked as Sales Director on the World Corporate Games Houston and the inaugural Houston Sports Awards Show, and worked for Houston Methodist, the number one hospital in Texas, to manage business development through their sports partnerships.  Emily returned to the Reno Aces to serve as General Manager in 2018-2022. Jaenson became the first female general manage in Triple-A Baseball in nearly 20 years.  Above all, Emily is a devoted wife and adoring mother. She is an avid runner, wholeheartedly passionate about leadership, instilling confidence, and relentlessly seeking thrilling adventures. Connect with Emily: Website: https://www.emilyjaenson.com/about-me Instagram: https://www.instagram.com/emilyjaenson/ Podcast: https://open.spotify.com/show/23Abw7F9B03gq7BMu8y2BE?si=10c7ebcb50bc4401 Connect with Ginny: Website: https://www.ginnypriem.com/ Instagram: https://www.instagram.com/ginnypriem/ LinkedIn: https://www.linkedin.com/in/ginny-priem-8a87248/ --- Send in a voice message: https://podcasters.spotify.com/pod/show/ginny-priem/message

Welcome to this special episode of the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. For major FDA decisions in the field of neurology, we release short special episodes to offer a snapshot of the news, including the main takeaways for the clinical community, as well as highlights of the efficacy and safety profile of the agent in question. In this episode, we're covering the recent approval of givinostat (Duvyzat; Italfarmaco) for the treatment of Duchenne muscular dystrophy (DMD). The therapy, a proprietary histone deacetylase (HDAC) inhibitor, was approved as the first nonsteroidal drug for patients with all genetic variants of DMD. The supporting data for the approval of givinostat comes from the phase 3 EPIDYS trial (NCT02851797). EPIDYS, a randomized, double-blind, placebo-controlled, multicenter study, included 179 ambulant male individuals who were randomly assigned 2:1 to either oral givinostat or placebo for an 18-month treatment period. Following the approval, Sharon Hesterlee, PhD, executive vice president and chief research officer of the Muscular Dystrophy Association, sat down to discuss the significance of the approval and how it changes the care for patients with DMD. She spoke specifically about the mechanism of action of the therapy, its safety profile, and how it may be used with other agents. In addition, she discussed other related topics on gene therapy and unmet needs for this patient population.  For more of NeurologyLive's coverage of givinostat's approval, head here: FDA Approves Italfarmaco's Givinostat for Duchenne Muscular Dystrophy Episode Breakdown: 0:30 – Givinostat approved for Duchenne muscular dystrophy 2:00 – Sharon Hesterlee, PhD, on the approval's implications 3:35 – Positive downstream effects of the approval 4:50 – Hersterlee on the safety profile of givinostat 5:40 – Promising outlook of the DMD field 6:45 – Overcoming roadblocks involved with gene therapy  8:55 – Remaining unmet needs for patients with Duchenne 10:15 – Closing thoughts on the approval  Thanks for listening to the NeurologyLive Mind Moments podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.

Join us as we explore the importance of advocating with today's guest - the Director of Advocacy Engagement for the well-known organization – who is committed to supporting policies and initiatives that make a positive impact on the lives of children and adults living with neuromuscular diseases.   ABOUT the GUEST Mark Fisher is the Director of Advocacy Engagement at the Muscular Dystrophy Association. In this role, Mark leads MDA's grassroots program and advocacy volunteer efforts. He works to empower advocates and connect them with key decisionmakers in order to advance public policies that improve the lives of the neuromuscular disease community. He previously served as the Digital Grassroots Manager at the American Heart Association and was also a field organizer on a U.S. Senate campaign. Mark earned his Master of Public Policy from American University and is originally from Pittsburgh, PA.     Thank you to our sponsor: Rap Index, tell them Roger sent you. https://www.rapindex.com   This podcast is dedicated to the art of advocacy. Contact Voices In Advocacy at: www.VoicesinAdvocacy.com 480 488-9150 At Voices in Advocacy, we work with organizations that want to inspire, educate, engage, and activate their supports to become even better effective, influential advocates.

Brooke Smith, Director National Resource Center

In the conclusion of Part 1, we delve into the formative years of Billy's life, tracing his journey from growing up in the Chicago area to developing a passion for basketball. His dedication to innovation and strong work ethic propelled him through a college career in journalism. This path led him to the pressbox, covering professional sports teams like the Bears and the Bulls, and hosting a college radio show named Practice Squad. Following a successful six-year stint at ESPN, Billy's enduring love for basketball persisted as he moved on to new endeavors. However, a shadow was cast over his life as he began experiencing alarming health issues related to his legs. The narrative left us on a suspenseful note, revealing a shocking twist: Billy had been diagnosed with a rare form of Muscular Dystrophy known as Limb Girdle Muscular Dystrophy. In Part 2, we accompany Billy on a distinctive journey where he discovers a creative method to not only raise awareness but also generate a substantial amount of funds for the Muscular Dystrophy Association. His innovative approach transforms him into a local celebrity within the Chicago area. Join me as we bring this tale of hope, inspiration, and unwavering determination to its conclusion - the remarkable story of Billy Zureikat. _______________________________________________________ Billy Socials: www.trippingbillyz.com Instagram: therealbillyz YouTube:  @therealbillyz  TikTok: therealbillyz_ ________________________________________________________ To donate to the Muscular Dystrophy Association with Billy's Donor Drive. https://mda.donordrive.com/index.cfm fuseaction=donorDrive.event&eventID=1391 _______________________________________________________ If you enjoyed this episode of PODcakes, please consider becoming a Patreon member today. All proceeds go to improving this channel. www.patreon.com/motorcyclesandpancakes ________________________________________________________ Follow us on Instagram at: motorcyclesandpancakes Email your guest suggestions to: thePODcakes@gmail.com This episode is also available on Spotify. Thumbnail Photo Credit: Colin Boyle | colinbphoto.com ________________________________________________________ Supporting Men's Mental Health: PODcakes, Motorcycles, and Pancakes Men, remember that YOU ARE NOT ALONE! The fragility of men's mental health can lead to rapid and profound struggles. If you find yourself grappling with depression or suicidal thoughts, reaching out for help is not a sign of weakness; it is a profound display of strength. Your life is invaluable, and you hold significant meaning for those who care deeply about you. Remember, you matter, and there is support available. If you are in crisis, please call 988 for the suicide prevention hotline inside the United States OR dial 911 Resources to help you find help www.headsupguys.org www.betterhelp.com "Suicide does not end the pain. It just spreads it to your loved ones." Jimmy Carr ________________________________________________________ *PODcakes, Motorcycles, and Pancakes have no association with HeadsUpGuys or BetterHelp. Our only wish is for your happiness, well-being, and the enjoyment of this beautiful life. ________________________________________________________ All PODcakes and Motorcycles and Pancakes are a Moto-Cakes Media Production. All Rights Reserved 2024

Part 1 of Outside the Helmet with Billy Zureikat This episode of "Outside the Helmet with Billy Zureikat" takes you on an inspiring journey through the life of Billy, a former sports journalist and ESPN employee, who faced a life-altering diagnosis of Limb Girdle Muscular Dystrophy 2L (LGMD2L). Join us as we explore Billy's childhood in the Chicago area, his love for basketball, and his experiences covering iconic sports teams. Delve into the impact of LGMD on his life, from the early signs affecting his basketball prowess to the eventual diagnosis. This episode is a captivating blend of personal anecdotes, sports passion, and the resilience of the human spirit, providing listeners with a unique and heartfelt perspective on life outside the helmet. Make sure to follow PODcakes here on Spotify and please leave us a comment on what you thought of this episode. Even if it's just a single word. ________________________________________________________ Billy's Socials www.trippingbillyz.com Instagram: therealbillyz YouTube: @therealbillyz Linktr.ee/therealbillyz ________________________________________________________ Donate to the Muscular Dystrophy Association to Billy's Donor Drive https://mda.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1391 ________________________________________________________ Email guest suggestions to: thePODcakes@gmail.com ________________________________________________________ PODcakes is also on Motorcycles and Pancakes YouTube Channel ________________________________________________________ Follow PODcakes on Instagram: MotorcyclesandPancakes ________________________________________________________ Supporting Men's Mental Health: PODcakes, Motorcycles and Pancakes Men, remember that YOU ARE NOT ALONE! The fragility of men's mental health can lead to rapid and profound struggles. If you find yourself grappling with depression or suicidal thoughts, reaching out for help is not a sign of weakness; it is a profound display of strength. Your life is invaluable, and you hold significant meaning for those who care deeply about you. Remember, you matter, and there is support available. If you are in crisis, please call 988 for the suicide prevention hotline inside the United States OR dial 911 Resources to help you find help www.headsupguys.org www.betterhelp.com "Suicide does not end the pain. It just spreads it to your loved ones." Jimmy Carr ________________________________________________________ *PODcakes and Motorcycles and Pancakes are not affiliated with HeadsUpGuys or Betterhelp. I just want you to be happy, get help and live this wonderful life. ________________________________________________________________________ All PODcakes and Motorcycles and Pancakes are a Moto-Cakes Media Production. All Rights Reserved 2024

This 45-minute CME-accredited program highlights the connection between the complement system and myasthenia gravis in regards to the pathophysiology and treatment of this rare disease. Jointly Provided by American Academy of CME and CheckRare CE. Support for this accredited continuing education activity has been made possible through educational grant from UCB. Start date: December 18, 2023. End date: December 18, 2024 To receive CME credit, go to https://checkrare.com/learning/p-myasthenia-gravis-and-the-complement-system/ Activity FacultyJames F Howard Jr, MDProfessor of Neurology, Medicine & Allied Health Department of NeurologyThe University of North Carolina at Chapel HillTarget AudienceThis activity has been designed to meet the educational needs of physicians specializing in neurology who may be involved in the diagnosis and care for individuals with TIO. Other healthcare providers, including neurology NPs and PAs, may also participate. Learning ObjectivesAfter participating in the activity, learners should be better able toDescribe efficacy of the treatment options for MG that target the complement system.Compare the safety of the treatment options for MG that target the complement system.Accreditation and Credit DesignationIn support of improving patient care, this activity has been planned and implemented by American Academy of CME, Inc. and CheckRare CE. American Academy of CME, Inc. is Jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.PhysiciansAmerican Academy of CME, Inc., designates this enduring material for a maximum of 0.5 AMA PRA Category 1 CreditsTM. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Other HCPsOther members of the care team will receive a certificate of participation.Disclosure StatementAccording to the disclosure policy of the Academy, all faculty, planning committee members, editors, managers and other individuals who are in a position to control content are required to disclose any relationships with any ineligible company(ies). The existence of these relationships is not viewed as implying bias or decreasing the value of the activity. Clinical content has been reviewed for fair balance and scientific objectivity, and all of the relevant financial relationships listed for these individuals have been mitigated.Disclosure of relevant financial relationships are as follows:Faculty EducatorDr. Howard discloses the following relevant financial relationships with ineligible companies:Grant/Research support (paid to his institution): Alexion Pharmaceuticals, argenx, Cartesian Therapeutics, Centers for Disease Control and Prevention, Myasthenia Gravis Foundation of America, Muscular Dystrophy Association, National Institutes of Health (including the National Institute of Neurological Disorders and Stroke and the National Institute of Arthritis and Musculoskeletal and Skin Diseases), Patient-Centered Outcomes Research Institute, and Ra Pharmaceuticals (now UCB Biosciences).Advisory Board/Consultant: Alexion Pharmaceuticals, argenx, Biologix Pharma, F. Hoffman-LaRoche Ltd, Immunovant Inc., Merck EMD Serono, NMD Pharma, Novartis Pharmaceuticals, Ra Pharmaceuticals (now UCB Biosciences), Regeneron Pharmaceuticals, Sanofi US, Horizon Therapeutics (now Amgen) Toleranzia AB, and Zai Labs. Shareholder (as part of a family trust): Johnson & Johnson, Pfizer, General Electric, GE Healthcare, GlaxoSmithKline, ViatrisNon-financial Support (meeting travel): Alexion Pharmaceuticals, argenx, Ra Pharmaceuticals (now UCB Biosciences), Toleranzia AB.Planners for this activity have no relevant financial relationships with any ineligible companies.This activity will review off-label or investigational information. The opinions expressed in this educational activity are those of the faculty, and do not represent those of the Academy or CheckRare CE. This activity is intended as a supplement to existing knowledge, published information, and practice guidelines. Learners should appraise the information presented critically, and draw conclusions only after careful consideration of all available scientific information.Method of ParticipationThere are no fees to participate in the activity. Participants must review the activity information including the learning objectives and disclosure statements, as well as the content of the activity. To receive CME credit for your participation, please complete the pre and post-program assessments. Your certificate will be emailed to you in within 30 days.Hardware/Software Requirements Windows Requirements: • Operating system: Windows XP Service Pack 2 or later • Browser: Internet Explorer 7 or later, Mozilla Firefox 2.5 or later • Internet connection: DSL, cable modem, or other high-speed connectionMacintosh Requirements: • Operating system: Mac OS X v10.3 or later • Browser: Mozilla Firefox 2.5 or later • Internet connection: DSL, cable modem, or other high-speed connectionPrivacyFor more information about the American Academy of CME privacy policy, please access http://www.academycme.org/privacy.htm For more information about CheckRare's privacy policy, please access https://checkrare.com/privacy/Contact: CEServices@academycme.orgCopyright© 2023. This CME-certified activity is held as copyrighted © by American Academy of CME and CheckRare CE. Through this notice, the Academy and CheckRare CE grant permission of its use for educational purposes only. These materials may not be used, in whole or in part, for any commercial purposes without prior permission in writing from the copyright owner(s).

This 15-minute CME-accredited program highlights the connection between the complement system and myasthenia gravis in regards to the pathophysiology of this rare disease. Jointly Provided by American Academy of CME and CheckRare CE. Support for this accredited continuing education activity has been made possible through educational grant from UCB. Start date: December 18, 2023. End date: December 18, 2024 To receive CME credit, go to https://checkrare.com/learning/p-myasthenia-gravis-and-the-complement-system-pathophysiology/ Activity FacultyJames F Howard Jr, MDProfessor of Neurology, Medicine & Allied Health Department of NeurologyThe University of North Carolina at Chapel HillTarget AudienceThis activity has been designed to meet the educational needs of physicians specializing in neurology who may be involved in the diagnosis and care for individuals with TIO. Other healthcare providers, including neurology NPs and PAs, may also participate. Learning ObjectivesAfter participating in the activity, learners should be better able toDescribe efficacy of the treatment options for MG that target the complement system.Compare the safety of the treatment options for MG that target the complement system.Accreditation and Credit DesignationIn support of improving patient care, this activity has been planned and implemented by American Academy of CME, Inc. and CheckRare CE. American Academy of CME, Inc. is Jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.PhysiciansAmerican Academy of CME, Inc., designates this enduring material for a maximum of 0.5 AMA PRA Category 1 CreditsTM. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Other HCPsOther members of the care team will receive a certificate of participation.Disclosure StatementAccording to the disclosure policy of the Academy, all faculty, planning committee members, editors, managers and other individuals who are in a position to control content are required to disclose any relationships with any ineligible company(ies). The existence of these relationships is not viewed as implying bias or decreasing the value of the activity. Clinical content has been reviewed for fair balance and scientific objectivity, and all of the relevant financial relationships listed for these individuals have been mitigated.Disclosure of relevant financial relationships are as follows:Faculty EducatorDr. Howard discloses the following relevant financial relationships with ineligible companies:Grant/Research support (paid to his institution): Alexion Pharmaceuticals, argenx, Cartesian Therapeutics, Centers for Disease Control and Prevention, Myasthenia Gravis Foundation of America, Muscular Dystrophy Association, National Institutes of Health (including the National Institute of Neurological Disorders and Stroke and the National Institute of Arthritis and Musculoskeletal and Skin Diseases), Patient-Centered Outcomes Research Institute, and Ra Pharmaceuticals (now UCB Biosciences).Advisory Board/Consultant: Alexion Pharmaceuticals, argenx, Biologix Pharma, F. Hoffman-LaRoche Ltd, Immunovant Inc., Merck EMD Serono, NMD Pharma, Novartis Pharmaceuticals, Ra Pharmaceuticals (now UCB Biosciences), Regeneron Pharmaceuticals, Sanofi US, Horizon Therapeutics (now Amgen) Toleranzia AB, and Zai Labs. Shareholder (as part of a family trust): Johnson & Johnson, Pfizer, General Electric, GE Healthcare, GlaxoSmithKline, ViatrisNon-financial Support (meeting travel): Alexion Pharmaceuticals, argenx, Ra Pharmaceuticals (now UCB Biosciences), Toleranzia AB.Planners for this activity have no relevant financial relationships with any ineligible companies.This activity will review off-label or investigational information. The opinions expressed in this educational activity are those of the faculty, and do not represent those of the Academy or CheckRare CE. This activity is intended as a supplement to existing knowledge, published information, and practice guidelines. Learners should appraise the information presented critically, and draw conclusions only after careful consideration of all available scientific information.Method of ParticipationThere are no fees to participate in the activity. Participants must review the activity information including the learning objectives and disclosure statements, as well as the content of the activity. To receive CME credit for your participation, please complete the pre and post-program assessments. Your certificate will be emailed to you in within 30 days.Hardware/Software Requirements Windows Requirements: • Operating system: Windows XP Service Pack 2 or later • Browser: Internet Explorer 7 or later, Mozilla Firefox 2.5 or later • Internet connection: DSL, cable modem, or other high-speed connectionMacintosh Requirements: • Operating system: Mac OS X v10.3 or later • Browser: Mozilla Firefox 2.5 or later • Internet connection: DSL, cable modem, or other high-speed connectionPrivacyFor more information about the American Academy of CME privacy policy, please access http://www.academycme.org/privacy.htm For more information about CheckRare's privacy policy, please access https://checkrare.com/privacy/Contact: CEServices@academycme.orgCopyright© 2023. This CME-certified activity is held as copyrighted © by American Academy of CME and CheckRare CE. Through this notice, the Academy and CheckRare CE grant permission of its use for educational purposes only. These materials may not be used, in whole or in part, for any commercial purposes without prior permission in writing from the copyright owner(s).

This 30-minute CME-accredited program highlights the connection between the complement system and myasthenia gravis in regards to the treatment of this rare disease. Jointly Provided by American Academy of CME and CheckRare CE. Support for this accredited continuing education activity has been made possible through educational grant from UCB. Start date: December 18, 2023. End date: December 18, 2024 To receive CME credit, go to https://checkrare.com/learning/p-myasthenia-gravis-and-the-complement-system-treatment-options/ Activity FacultyJames F Howard Jr, MDProfessor of Neurology, Medicine & Allied Health Department of NeurologyThe University of North Carolina at Chapel HillTarget AudienceThis activity has been designed to meet the educational needs of physicians specializing in neurology who may be involved in the diagnosis and care for individuals with TIO. Other healthcare providers, including neurology NPs and PAs, may also participate. Learning ObjectivesAfter participating in the activity, learners should be better able toDescribe efficacy of the treatment options for MG that target the complement system.Compare the safety of the treatment options for MG that target the complement system.Accreditation and Credit DesignationIn support of improving patient care, this activity has been planned and implemented by American Academy of CME, Inc. and CheckRare CE. American Academy of CME, Inc. is Jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.PhysiciansAmerican Academy of CME, Inc., designates this enduring material for a maximum of 0.5 AMA PRA Category 1 CreditsTM. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Other HCPsOther members of the care team will receive a certificate of participation.Disclosure StatementAccording to the disclosure policy of the Academy, all faculty, planning committee members, editors, managers and other individuals who are in a position to control content are required to disclose any relationships with any ineligible company(ies). The existence of these relationships is not viewed as implying bias or decreasing the value of the activity. Clinical content has been reviewed for fair balance and scientific objectivity, and all of the relevant financial relationships listed for these individuals have been mitigated.Disclosure of relevant financial relationships are as follows:Faculty EducatorDr. Howard discloses the following relevant financial relationships with ineligible companies:Grant/Research support (paid to his institution): Alexion Pharmaceuticals, argenx, Cartesian Therapeutics, Centers for Disease Control and Prevention, Myasthenia Gravis Foundation of America, Muscular Dystrophy Association, National Institutes of Health (including the National Institute of Neurological Disorders and Stroke and the National Institute of Arthritis and Musculoskeletal and Skin Diseases), Patient-Centered Outcomes Research Institute, and Ra Pharmaceuticals (now UCB Biosciences).Advisory Board/Consultant: Alexion Pharmaceuticals, argenx, Biologix Pharma, F. Hoffman-LaRoche Ltd, Immunovant Inc., Merck EMD Serono, NMD Pharma, Novartis Pharmaceuticals, Ra Pharmaceuticals (now UCB Biosciences), Regeneron Pharmaceuticals, Sanofi US, Horizon Therapeutics (now Amgen) Toleranzia AB, and Zai Labs. Shareholder (as part of a family trust): Johnson & Johnson, Pfizer, General Electric, GE Healthcare, GlaxoSmithKline, ViatrisNon-financial Support (meeting travel): Alexion Pharmaceuticals, argenx, Ra Pharmaceuticals (now UCB Biosciences), Toleranzia AB.Planners for this activity have no relevant financial relationships with any ineligible companies.This activity will review off-label or investigational information. The opinions expressed in this educational activity are those of the faculty, and do not represent those of the Academy or CheckRare CE. This activity is intended as a supplement to existing knowledge, published information, and practice guidelines. Learners should appraise the information presented critically, and draw conclusions only after careful consideration of all available scientific information.Method of ParticipationThere are no fees to participate in the activity. Participants must review the activity information including the learning objectives and disclosure statements, as well as the content of the activity. To receive CME credit for your participation, please complete the pre and post-program assessments. Your certificate will be emailed to you in within 30 days.Hardware/Software Requirements Windows Requirements: • Operating system: Windows XP Service Pack 2 or later • Browser: Internet Explorer 7 or later, Mozilla Firefox 2.5 or later • Internet connection: DSL, cable modem, or other high-speed connectionMacintosh Requirements: • Operating system: Mac OS X v10.3 or later • Browser: Mozilla Firefox 2.5 or later • Internet connection: DSL, cable modem, or other high-speed connectionPrivacyFor more information about the American Academy of CME privacy policy, please access http://www.academycme.org/privacy.htm For more information about CheckRare's privacy policy, please access https://checkrare.com/privacy/ContactFor any questions, please contact: CEServices@academycme.org Copyright© 2023. This CME-certified activity is held as copyrighted © by American Academy of CME and CheckRare CE. Through this notice, the Academy and CheckRare CE grant permission of its use for educational purposes only. These materials may not be used, in whole or in part, for any commercial purposes without prior permission in writing from the copyright owner(s).

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

When Michael Kennedy first stepped into the CFO office at the Muscular Dystrophy Association (MDA) in 2018, he was surprised to learn that the association was spending $8 million annually on office space across the country. “Why were we in these offices?,” asks Kennedy, voicing the question that helped to kick off the first of what he now characterizes as a multichapter digital transformation. As it turned out, the 93 offices occupied by the MDA were a legacy of the organization's historic Jerry Lewis Labor Day Telethon, a once-massive annual fundraising event for that had lost its mojo in the Age of the Internet. “MDA wanted to have an office near every local television station that was participating in the Telethon broadcast,” explains Kennedy, who notes that the MDA offices needed to compete with local Girl Scout troops and firefighters to secure fundraising airtime on the local affiliates.    “But the fact is that we had stopped doing the Telethon 8 years before I arrived,” reports Kennedy, who adds that the $8 million that the MDA had once paid in real estate fees now goes entirely to support MDA's causes and mission—a development that the pandemic no doubt helped to accelerate. He continues: “We now have a 100 percent remote office environment.” Still, the pandemic put much of the transformation at the MDA into a holding pattern, as fundraising events and activities came to a near standstill. According to Kennedy, however, the MDA is now on its way to matching and even surpassing pre-pandemic fundraising levels, as it opens yet another impressive chapter in its healthcare history. –Jack Sweeney

The following is a conversation between Dr. Donald Wood, President & CEO of the Muscular Dystrophy Association, and Denver Frederick, the Host of The Business of Giving.

Donnie Demers has had a charmed life with a loving family, childhood performing, and success after success until the multi-platinum record days in France. His began playing the piano at the age of four, but his first entry into performance was when he became the poster child for the Muscular Dystrophy Association and joining his aunt, a...

October is National Disability Employment Awareness Month, celebrating a powerful community that advocates for everything from remote work to accessible travel to more positive representation in the media. In this episode, WomenHeard: Changemakers host Georgia Galanoudis talks with Mindy Henderson, Editor-in-Chief of Quest Media. This adaptive lifestyle platform for the Muscular Dystrophy Association supports over a million Americans with tools and resources to help them live their most independent lives.  An ambassador at the age of 4 for the Muscular Dystrophy Association, Mindy said she took the disability that could have been negative in her life and turned it into a 20-year career in tech, along with marriage, children and intentionality. However, for the majority of her career, Mindy was often the only person in a wheelchair she saw and she felt exhausted not being able to show up as her authentic self. After a layoff that turned out to be the "best thing that happened for [her] career", Mindy pivoted into motivational speaking, writing a book and engaging in other professional paths that advocate for DEI and the inclusion of a diverse workforce. Listen for details on why accommodations are "success enablers" for disabled employees; plus, how we can continue to support and celebrate resiliency in the disability community. 

Gary Honold spent more than 23 years as a firefighter in Montana and 20 as a career firefighter and captain in the City of Missoula. His experience in working the fire service, along with 27 years volunteering with the Muscular Dystrophy Association, and his on health challenges have provided him a unique perspective on life and how to live. Support this podcast at https://patreon.com/firehouselogbookpodcast Comments or suggestions? Contact us at: Email - FirehouseLogbook@gmail.comTwitter - @FDLogbookInstagram - @FDLogbookPodcastFacebook - www.facebook.com/FDLogbookPodcastWebsite - www.firehouselogbook.captivate.fm Music: "Tired traveler on the way to go home", Andrew Codeman via Freemusicarchive.com

Thanks ButcherBox! Get $20 off + free ground beef at https://butcherbox.com/tfc - code TFC   Go to Zocdoc.com/tfc and download the Zocdoc app to sign-up for FREE and book a top-rated doctor.   Chelsea is joined by two guests, Madison Lawson and Paul Melmeyer, to talk about the high cost of existing while disabled, especially when traveling, and what we can actually do about it.   Learn more about the Muscular Dystrophy Association here: https://www.mda.org/   ***** MORE FROM TFD Join our membership program, The Society at TFD on Patreon to get exclusive ad-free bonus content + access to tons of other perks like our members-only book club: https://www.patreon.com/FinancialDiet The Financial Diet site: http://www.thefinancialdiet.com Facebook: https://www.facebook.com/thefinancialdiet Twitter: https://twitter.com/TFDiet Instagram: https://www.instagram.com/thefinancialdiet/?hl=en

Steven Sashen is the visionary, marketer, and CEO of Xero Shoes. He is a Masters All-American sprinter (one of the fastest men over the age of 50 in the US) and former All-American gymnast. He was also a professional stand-up comic, cognitive psychology researcher, and taught Tai Chi and Zen Archery. He started Xero Shoes after drawing inspiration from reading Born to Run and experiencing first hand the power of running barefoot.  It wasn't until he suffered constant running related injuries in regular shoes when he was recommended by a friend to read Born to Run and  noticed that running barefoot eliminated his injuries.  He looked to the Tarahumura Runners and developed his very own huaraches running sandals.  From there, well the rest is now history as Xero Shoes were soon after created for everyone to now engage in the barefoot experience. ATTENTION:  Through your donations, subscriptions, likes, mentions, recommendations, and downloads we can keep this podcast alive and going while also providing charity to the Muscular Dystrophy Association (MDA), Cystic Fibrosis Foundation (CFF), and Cure SMA (Spinal Muscular Atrophy).  We will donate 25% of all proceeds to these associations in an effort to bolster their ongoing research and provision of patient resources.  Thank you for all of your help.  Get It Ra appreciates all that you do.   To donate and become a Show Patreon Member click here https://www.patreon.com/GetItRa  Watch on YouTube at https://www.youtube.com/channel/UCdwttRw4sudrGN6u3Gf1Myw/videos  Follow us on Facebook at https://www.facebook.com/Get-It-RA-363158217990024  Follow us on Twitter at https://twitter.com/GetItRA_Podcast  To donate to Cure SMA click here https:https://donate-curesma.donordrive.com/index.cfm?fuseaction=donate.event&eventID=532 To donate to the Muscular Dystrophy Association click here https://mda.donordrive.com/index.cfm?fuseaction=donate.event&eventID=824&referrer=topdonatebutton%20mdaorg  To donate to the Cystic Fibrosis Foundation click here https://www.cff.org/give-monthly 

We're celebrating Labor Day this week by republishing a classic episode from last year all about the television event that became synonymous with not only this holiday, but also its enigmatic (and problematic) host - Mr. Jerry Lewis. Enjoy!---It's that time of year again - Labor Day Weekend. And we all know the two most important things about that day: it's the final chance to wear white clothing (thank you, Elle Woods), and it's also when the nation used to tune into the Muscular Dystrophy Association's annual fundraising broadcast, or as it's better known, the Jerry Lewis Telethon.Rob teaches Ray about Good Jerry and Bad Jerry; the early days of Martin and Lewis, their subsequent break-up, and their unexpected reunion; how Lainie Kazan earned her Actor's Studio stripes while singing Barry Manilow; Joan Crawford's questionable poetry choices; and why MDA eventually disassociated itself from the very man who popularized its fundraiser and championed its cause.If you like what we're doing, please support us on Patreon, or you can subscribe to our bonus content on Apple Podcasts. And we'd love to find even more listeners, so if you have time, please leave us a rating or review on Apple Podcasts, Spotify, or wherever you listen to podcasts. And if you have any other thoughts or feedback you'd like to share with us, we'd love to hear from you - feel free to email us or send us a message on social media.TEAMRay HebelRobert W. SchneiderMark SchroederBilly RecceDaniel SchwartzbergGabe CrawfordNatalie DeSaviaARTICLESEPISODE CLIPSOpening Credits for the MDA TelethonLewis and Martin ReuniteLewis on Female ComicsLewis on RefugeesLewis Uses a Gay Slur“Bad Jerry” (Lewis on Larry King)

This week our guest is Donald S. Wood, Ph.D, President and CEO of the Muscular Dystrophy Association. He discusses recent breakthroughs in medical research and treatment of auto immune diseases. He also looks fondly back on their historic Labor Day weekend telethon. Have questions/comments/suggestions? Email us at mdebnath@give.org. Don't forget to follow or subscribe and leave a comment on iTunes.

Recently, the Phelan-McDermid Syndrome Foundation was successful in applying for and receiving a specific ICD code (International Classification of Diseases code) for Phelan-McDermid syndrome from the Centers for Disease Control (CDC). Kate sits down with Annie Kennedy of the EveryLife Foundation, who has longstanding expertise in what a specific code can mean for progress for rare diseases. Kate asks - what exactly is an ICD code? What does this mean for progress in Phelan-McDermid syndrome research? Why didn't we have one already? Can it be used internationally? What was the process in getting one? What are some examples of progress after getting a code? What is the code not helpful for? Annie Kennedy is the Chief of Policy, Advocacy, and Patient Engagement at the EveryLife Foundation. She also previously served within the Parent Project Muscular Dystrophy and the Muscular Dystrophy Association. Her work includes building strong partnerships with policy makers, federal agencies, industry partners, and alliances to advance research and access in rare disease. She has developed an ICD code roadmap with the EveryLife Foundation, has conducted economic burden studies in rare disease, led efforts for newborn screening, led access efforts after the first therapies were approved by the FDA for Duchenne muscular dystrophy, and much more.

Today we're joined by Rhys Hoskins to talk 2022 Phillies playoff run, his iconic home run against the Braves, behind the scenes moments from last year's postseason, recovering from injury, and being the guest with the longest appearance gap in our show's history! Check out Rhys's "Go Yard" event on June 22nd benefitting the Muscular Dystrophy Association and purchase tickets here: Other topics in today's episode include recapping more Braves/Mets drama with Pete Alonso being hit by a pitch, the wildfires and smoke causing games to be postponed along the East Coast, Elly De La Cruz absolutely stealing the show in his first couple games, Luis Arráez getting a hit every time he's at bat, and more! Thanks for listening and we'll see you next week. If you or someone you know has a gambling problem, crisis counseling and referral services can be accessed by calling 1-800-GAMBLER (1-800-426-2537) (IL/IN/MI/NJ/PA/WV/WY), 1-800-NEXT STEP (AZ), 1-800-522-4700 (CO/NH), 888-789-7777/visit http://ccpg.org/chat (CT), 1-800-BETS OFF (IA), 1-877-770-STOP (7867) (LA), 877-8-HOPENY/text HOPENY (467369) (NY), visit OPGR.org (OR), call/text TN REDLINE 1-800-889-9789 (TN), or 1-888-532-3500 (VA). 21+ (18+ NH/WY).  Physically present in AZ/CO/CT/IL/IN/IA/LA/MI/NH/NJ/NY/OR/ PA/TN/VA/WV/WY only. Min. $5 deposit required. Eligibility restrictions apply. See http://draftkings.com/sportsbook for details. Learn more about your ad choices. Visit megaphone.fm/adchoices

Our next guest is the Illinois Ambassador for the Muscular Dystrophy Association. At 30 years old, he began to notice weakness and muscle deterioration in his legs. Years go by until he receives a diagnosis of a rare and incurable disease called limb-girdle muscular dystrophy. He has since found joy and community within the food and hospitality scene. He's collaborated with Paulie Gee's Logan Square, JP Grazianos, JT's Genuine, and so many more. A link to donate is in the show notes. Please enjoy my conversation with Billy ZureikatBilly Z MDA Campaignhttps://www.instagram.com/therealbillyzhttps://www.instagram.com/iamconsciouslycurious

Kyle Filkins and Kris Napper were both born with SMA, spinal muscular atrophy. Meeting as kids at The Muscular Dystrophy Association summer camp, they have developed a friendship and a documentary. After beginning the use of the drug Evrysdi, their rare genetic disease stopped progressing, and the oral form of this medication allowed them to avoid spinal injections. Now in their thirties, Kris and Kyle are advocating for the community of those with SMA, working on their documentary, and looking forward to more adventures.  Kris explains, "Just shortly before Evrysdi was released and made available, there was another drug called Spinraza that was the first treatment ever for our disability. It was a spinal injection, which poses some complications as far as it's a procedure with some risk. It can be painful, and there's the risk of hitting nerves and causing damage. It's not the most fun thing to go through, but it was beneficial. So I was doing that." "So for young children, just being diagnosed can be life-changing because you can stop that progression before it really hits. For us, we've already had significant progression. Still, hopefully, this will stop it where it is, and we'll be able to continue our lives for the foreseeable future, a lot better and longer than originally anticipated." Kyle elaborates, "Before I was on any type of therapy, I would go to bed one day able to do something, and I'd wake up the day after not being able to do that. And it would never come back. And it's pretty great to be able to go to bed and sleep securely knowing that what I did today I can, for the most part, probably do tomorrow. It's definitely life-changing. That's for sure." "There's been a lot of people interested in this story. Kind of piggybacking here on what Napper said, at the outset, it was really kind of just a budget film and like, "Oh, maybe they'll do cool activities and make jokes and stuff." But then with the advent of this therapy and specifically Evrysdi, that's really changed the outlook of the scope of the film, and for the better, as Napper said."  @KKtheFilm #SMA #SpinalMuscularAtrophy #MuscularDystrophy #RareDisease #Evrysdi  KrisandKyletheFilm.com SnappyClothing.com Evrysdi.com Listen to the podcast here

Kyle Filkins and Kris Napper were both born with SMA, spinal muscular atrophy. Meeting as kids at The Muscular Dystrophy Association summer camp, they have developed a friendship and a documentary. After beginning the use of the drug Evrysdi, their rare genetic disease stopped progressing, and the oral form of this medication allowed them to avoid spinal injections. Now in their thirties, Kris and Kyle are advocating for the community of those with SMA, working on their documentary, and looking forward to more adventures.  Kris explains, "Just shortly before Evrysdi was released and made available, there was another drug called Spinraza that was the first treatment ever for our disability. It was a spinal injection, which poses some complications as far as it's a procedure with some risk. It can be painful, and there's the risk of hitting nerves and causing damage. It's not the most fun thing to go through, but it was beneficial. So I was doing that." "So for young children, just being diagnosed can be life-changing because you can stop that progression before it really hits. For us, we've already had significant progression. Still, hopefully, this will stop it where it is, and we'll be able to continue our lives for the foreseeable future, a lot better and longer than originally anticipated." Kyle elaborates, "Before I was on any type of therapy, I would go to bed one day able to do something, and I'd wake up the day after not being able to do that. And it would never come back. And it's pretty great to be able to go to bed and sleep securely knowing that what I did today I can, for the most part, probably do tomorrow. It's definitely life-changing. That's for sure." "There's been a lot of people interested in this story. Kind of piggybacking here on what Napper said, at the outset, it was really kind of just a budget film and like, "Oh, maybe they'll do cool activities and make jokes and stuff." But then with the advent of this therapy and specifically Evrysdi, that's really changed the outlook of the scope of the film, and for the better, as Napper said."  @KKtheFilm #SMA #SpinalMuscularAtrophy #MuscularDystrophy #RareDisease #Evrysdi  KrisandKyletheFilm.com SnappyClothing.com Evrysdi.com Download the transcript here

Paul Melmeyer, Vice President of Public Policy and Advocacy for the Muscular Dystrophy Association, previews the organization's Hill Day which focuses on Accessible Air Travel; Demeshia Montgomery, President of the new Patients Rising Now Patient Senate, tells us about the importance of patient voices; the Senate HELP committee is set to hold a hearing entitled “The Need to Make Insulin Affordable for All Americans” on May 10th; and our Patient Correspondent is Brandi Privitera from South Carolina's 1st Congressional District. Muscular Dystrophy Association Webpage Senate HELP News Release: HELP Committee to Bring CEOs of Major Insulin Manufacturers and PBMs Together for Historic Hearing to Discuss the Need to Lower Insulin Prices and the Cost of Other Prescription Drugs  

Join us today for a very special episode featuring Buffalo Bills player and MDA advocate, Nyheim Hines and Lily Sander, advocate for the MDA and living with MD. Muscular dystrophy is a genetic disorder that affects the muscles in the body. It is a progressive condition that worsens over time and can result in severe disability or even death. If you or a loved one has recently been diagnosed with muscular dystrophy, it can be overwhelming and scary. However, with the right knowledge and support, it is possible to navigate the diagnosis and live a fulfilling life with the disease. Understanding Muscular Dystrophy Muscular dystrophy is a group of disorders that affect the muscles, causing weakness and muscle wasting. It is caused by genetic mutations that affect the proteins responsible for muscle function. The most common form of muscular dystrophy is Duchenne muscular dystrophy, which primarily affects boys and typically presents in early childhood. Other forms of muscular dystrophy include Becker muscular dystrophy, limb-girdle muscular dystrophy, and facioscapulohumeral muscular dystrophy. Navigating the Diagnosis If you or a loved one has been diagnosed with muscular dystrophy, it is important to understand the implications of the condition and what to expect. Your doctor will likely provide information about the specific type of muscular dystrophy you have and how it may affect your body over time. It is also important to seek out a support system to help you navigate the emotional and practical aspects of living with muscular dystrophy. This may include family members, friends, support groups, and healthcare providers. Talking to others who have experience with the condition can be especially helpful in understanding what to expect and how to cope. Living with Muscular Dystrophy Living with muscular dystrophy can present a range of challenges, both physical and emotional. However, there are many strategies and resources available to help you manage the disease and maintain your quality of life. Muscular dystrophy can be a challenging condition to live with, but with the right knowledge and support, it is possible to maintain a fulfilling life. By understanding the implications of the condition, seeking out a supportive community, and utilizing the resources available, you can navigate the diagnosis and live your best life with muscular dystrophy. _____________________ We are thrilled to announce that Burn Boot Camp and @MDAorg are coming together for the seventh annual, “Be Their Muscle” event! This year, Burn Boot Camp is looking to raise $1 MILLION to benefit Muscular Dystrophy Association (MDA) families!! Families are at the heart of the MDA's mission. The MDA strives to create more hope and answers for families living with muscular dystrophy and related diseases that take away physical strength and mobility. Join us across the nation as we work out while raising funds and awareness for the MDA. The event will take place at participating Burn Boot Camp locations on April 22nd and we can't wait to see YOU out on the Floating Floor! To learn more about getting involved, please visit THIS LINK today!  #BeTheirMuscle 1️⃣ Head to this link 2️⃣ DONATE to help us raise funds for ⁠@mdaorg One mission, one BURN NATION!

While there is growing ability to pursue the development of therapies for ultra-rare diseases, they remain challenging because of economics. One major barrier is the difficulty in getting reimbursement for therapies in the absence of well-powered clinical trials that recruit enough participants to satisfy payors demands for adequate proof of the value of a therapy. The Muscular Dystrophy Association, earlier this year, awarded the nonprofit biotechnology Cure Rare Disease a grant to research novel reimbursement strategies for ultra-rare disease therapies. We spoke to Rich Horgan, founder and president of Cure Rare Disease, about the evolution of his organization, its growing pipeline of therapies, and why developing a viable reimbursement model is essential to creating sustainable development of ultra-rare disease therapies.

The MDA stands for the Muscular Dystrophy Association, which is a nonprofit organization dedicated to finding treatments and cures for muscular dystrophy, ALS, and related neuromuscular diseases. The MDA works to support families affected by these diseases by providing resources, clinical care, and scientific research. The organization also hosts events and fundraisers to raise awareness and funds for research and support programs. Founded in 1950, the MDA has made significant contributions to the field of neuromuscular disease research, including funding the development of new treatments and clinical trials. Through their work, the MDA has helped to improve the lives of countless individuals and families affected by these devastating diseases. We are thrilled to announce that Burn Boot Camp and @MDAorg are coming together for the seventh annual, “Be Their Muscle” event! This year, Burn Boot Camp is looking to raise $1 MILLION to benefit Muscular Dystrophy Association (MDA) families!! Families are at the heart of the MDA's mission. The MDA strives to create more hope and answers for families living with muscular dystrophy and related diseases that take away physical strength and mobility. Join us across the nation as we work out while raising funds and awareness for the MDA. The event will take place at participating Burn Boot Camp locations on April 22nd and we can't wait to see YOU out on the Floating Floor! To learn more about getting involved, please visit the link in our bio today! #BeTheirMuscle

WARNING: Explicit Language in this episode   Today Asif and Ali are pleased to welcome comedian Steve Way, co-star of the hit Hulu show ‘Ramy' (0:57). They talk about how Steve got into comedy, his influences, and some of the barriers he has faced being a comedian with a disability. Ali then asks Steve about his past employment as a substitute teacher and Steve talks about how much he enjoyed interacting with  and teaching high school students. They then discuss how Steve got his role on ‘Ramy' and Bella Hadid playing his fiance this season. Ali then asks Steve about his advocacy for patients with disabilities. They then talk to Steve about living with his rare form of muscular dystrophy, Ullrich congenital muscular dystrophy, his interaction with health professionals and his diagnostic odyssey. Steve highlights how important it is for health professionals to discuss reproductive issues with patients who have disabilities.    Check out Steve's 1 hour set at Caveat in NYC on Dec 29!    Then Ali and Asif do deep dive into muscular dystrophy (28:37), specifically the most common form, Duchenne Muscular Dystrophy. Asif goes over the cause, symptoms, prognosis and treatment. Then Asif discusses the rare entity  Ullrich congenital muscular dystrophy. He then goes over some potential existing gene therapies for muscular dystrophy.    The opinions expressed are those of the hosts, and do not reflect those of any other organizations. This podcast and website represents the opinions of the hosts. The content here should not be taken as medical advice. The content here is for entertainment and informational purposes only, and because each person is so unique, please consult your healthcare professional for any medical questions.    Music courtesy of Wataboi and 8er41 from Pixabay   Contact us at doctorvcomedian@gmail.com   Follow us on Social media: Twitter: @doctorvcomedian Instagram:   doctorvcomedian   Show Notes:   Steve Way personal website https://www.thesteveway.com/ 32ND ANNUAL STEVE WAY BIRTHDAY BASH: https://www.caveat.nyc/events/steve-way-12-29-2022 ‘Ramy' Actor Steve Way Wonders Why Americans Haven't ‘Rioted' Over This One Issue: https://www.huffpost.com/entry/ramy-steve-way-disability-health-care-2020_n_5d2e3533e4b0a873f6430f2a Muscular Dystrophy Canada: https://muscle.ca/ Muscular Dystrophy Association: https://www.mda.org/ Collagen VI-Related Dystrophies: https://www.ncbi.nlm.nih.gov/books/NBK1503/ Cure CMD: https://www.curecmd.org/

In this episode, Megan Nivens-Tannett discusses being a single mother and launching her own business. She also discusses the importance of leaving our egos at the door and how, with the proper people and the right mentality, our business can grow. Megan has  served in various roles including Vice President for Huntsville-based startup accelerator The Foundry; Director of Digital Marketing for IoT tech firm Synapse Wireless; has held multiple roles with leading advertising firm McCann Erickson (in support of the US Army), and prior to that, served as the Executive Director for the Muscular Dystrophy Association where she opened the first office in North Alabama.    In this episode: Megan shares about her background and how she found Flourish Transitioning from the corporate world to being a mentor for high school students taking up entrepreneurship You can't do everything by yourself Equip yourself with the right information to be successful  Key Takeaways: Learning to be vulnerable can help you be successful Being honest and transparent about yourself and business sets you up for success Surround yourself with the right people so you can flourish Learn to leave your ego at the door    Tweetable Quote: “I really learned to be courageous and I quickly had to check my ego at the door and realize what I was good at versus what I wasn't good at. And I very quickly learned that I could not do everything on my own. And in order for me to be successful, I really needed to let my guard down, be vulnerable, ask what one would call the stupid questions, and surround myself with people again that are way better at certain things than I was. ” -  Megan Nivens-Tannett   Connect with Megan: Website: https://www.flourishconsultingservices.com/ (https://www.flourishconsultingservices.com/ ) Social Media:https://www.linkedin.com/in/megan-nivens/ (LinkedIn)   Connect with Denis: Email: denis@leadingchangepartners.com Website:http://www.leadingchangepartners.com/ ( http://www.leadingchangepartners.com/)  Leadership Is Changing Facebook Group:https://www.facebook.com/groups/LeadershipIsChanging/ ( https://www.facebook.com/groups/LeadershipIsChanging/) Leadership is Changing LinkedIn Page: https://www.linkedin.com/company/leadership-is-changing-podcast/ (https://www.linkedin.com/company/leadership-is-changing-podcast/)

Megan's background ranges from working in non-profit to multi-million-dollar organizations, engaging in digital marketing, public relations, strategic communications, business development, and more. Prior to starting Flourish in 2018, she served as Vice President for Huntsville-based startup accelerator The Foundry; prior to that, she served as the Director of Digital Marketing for Internet of Things (IoT) tech firm, Synapse Wireless. In addition, she held various roles with leading Advertising firm McCann Erickson, where she managed marketing and public affairs for their client, the U.S. Army, for both USAREC and ROTC Commands. Prior to that, she served as the Executive Director for the Muscular Dystrophy Association, where she opened the first office in North Alabama. Megan's passion is people and finding solutions to problems – whether it's mentoring students, guiding non-profits, helping her kid's maneuver life's challenges, or working with clients to determine areas for growth and overall success. In addition to managing her business, she volunteers her time, including serving as a mentor for the Madison, AL CEO high school program, being an active student mentor through the University of Central Florida (go Knights!), serves as a business coach for The Catalyst Center for Business and Entrepreneurship, volunteers as a communications committee member for Semper Fi, speaks at various events to educate and inform about the public relations/marketing/communications field and was most recently chosen for Leadership of Greater Huntsville's Flagship 35 class. 0:00 Start 3:45 Intro 4:40 Shoutout to Morgan Vick 6:20 Fall Break and Client Strategy 12:20 Marketing Concept Flip 15:20 Teaching Employees the Flourish approach 16:40 UNA shoutout 18:50 Special Mother/Daughter Relationship 25:22 Megan's Family 30:09 A Father's Impact 32:26 Clearwater FL 35:50 Application to the Wheel of Fortune 39:05 UCF days and journalism 44:15 Creative freedom 48:26 Competitive Nature 52:35 Fake it till you make it ? 59:37 Starting Flourish 01:10:50 The idea behind the SheBoss! Podcast 01:24:25 Toni Eberhart and Urban Engine 01:27:24 Ragnar, Fitness, stress management 01:41:50 The Zegan World Tour 01:50:56 The Pic 6 - Outdoor Venues 01:58:56 The Quick 6 02:04:40 Conclusion Host/Interviewer: M. Troy Bye, Owner, Our Town Podcast a brand of the Our Town Company, LLC Website: www.ourtownpodcast.net Spotify Channel: https://spoti.fi/3QtpT8z Audio available on all platforms. Just search for "Our Town Podcast"

I cannot wait for you to hear my chat with one of the most inspiring people on this planet. On a mission to leave the world a little better than how she found it, Mindy strives to help create a world where inclusion is the norm, where people see possibilities instead of limitations, and where no challenge is too big to overcome.   Driven to build a world that welcomes and includes EVERYONE, Mindy is a powerful leader in disability/ability rights, with specific interests in accessible air travel, universal design, inclusive style and better representation for the disabled community in entertainment.   A popular motivational speaker (giving her first speech at the age of four as the Texas State Poster Child for the Muscular Dystrophy Association!), Mindy's mission is to show up as an example of positivity, hope, bravery and possibilities, and to help individuals to own their adversity, to stop making excuses, to see their fullest potential and to give them the tools to reach for it.    Mindy's book,  "The Truth About Things That Suck" is for anyone who wants a new perspective on adversity when times get tough. The book covers job loss, parenting challenges, love, life, loss and more, and teaches us ALL that the wrong mindset can be far more disabling than what any wheelchair might represent.   Mindy is the Editor-In-Chief of the national Muscular Dystrophy Association's family of Quest content including the magazine, blog, and podcast. The Quest mission is to empower the neuromuscular disease community - and the broader community of individuals with disabilities - to live their lives to their fullest potential. Engaging thought leaders in conversations that matter and that move the community forward, content is intended to inform, educate, inspire and entertain.   Named a 2022 “Woman of Influence” by Success Magazine, Mindy is also the host of "The Truth About Things That Suck" podcast, guest contributor of “Morning Motivations” on CBS Austin's “We Are Austin” lifestyle morning show and was recently named an “Austin Woman to Watch” by Austin Woman Magazine.   In the spirit of living a life without limits, despite her significant physical limitations, Mindy has also accomplished:   - Multiple singing appearances on national television - A CD recorded with George Strait's musicians accompanying her - A trip to one of the least wheelchair accessible countries on the planet, spending two weeks there, and visiting three different cities to adopt her daughter…after the government of that country told her that her disability made her unfit.   Mindy's passion for making the impossible, possible, is contagious…and she's not finished yet! Find her on IG : @mindyhendersonspeaks Find Audrey on IG: @helloaudreyrose  

September 15th is International Myotonic Dystrophy Awareness Day. To learn more about helping educate and advocate for Myotonic Dystrophy visit the Muscular Dystrophy Association or Myotonic Dystrophy Foundation. The purpose of this Awareness Day is to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as Fragile X syndrome and Huntington's disease. To learn about the different types of myotonic dystrophy, visit this NORD webpage. In addition to this podcast host/producer who lives with Myotonic Dystrophy Type 1, the following podcast episodes have featured guests living with DM1, DM2, or caregivers in a DM family: Food = Medicine Passion and Motivation to Move through the Hard Stuff Working with Wounded Warriors Music Gives Me a Peace Bubble Salute to Caregivers Stories of Healing with Essential Oils

America just celebrated Labor Day, and we all know the two things that day has historically signified: it's the last chance to wear white shoes (thank you, Elle Woods), and, until 2014, it was also the only chance to tune in to the Muscular Dystrophy Association's annual fundraiser - better known to most people as the Jerry Lewis Telethon. Rob teaches Ray about Good Jerry, Bad Jerry, and all the Jerrys in between; the early days, break up, and reunion of Martin and Lewis; how Lainie Kazan earned her Actor's Studio stripes while singing Barry Manilow; Joan Crawford's questionable poetry choices; and why MDA eventually disassociated itself from the very man who popularized its fundraiser and championed its cause. If you like what we are doing, please support us on Patreon. TEAM Ray Hebel Robert W. Schneider Mark Schroeder Billy Recce Daniel Schwartzberg Gabe Crawford Natalie DeSavia ARTICLES EPISODE CLIPS Opening Credits for the MDA Telethon Lewis and Martin Reunite Lewis on Female Comics Lewis on Refugees Lewis Uses a Gay Slur “Bad Jerry” (Lewis on Larry King) Lainie Kazan Sings “Copacabana” Joan Crawford Reads Poetry Jerry's Final “Never Walk Alone” Jerry Lewis's Song on His Father's Will Early Jerry Lewis Telethon Clips & Audio ADDITIONAL MUSIC & SOUND EFFECTS “Happy Bee” • Kevin MacLeod (incompetech.com) • Licensed under Creative Commons: By Attribution 4.0 • http://creativecommons.org/licenses/by/4.0/ Additional Sound Effects from Final Cut Pro, iLife, and Logic Pro Learn more about your ad choices. Visit megaphone.fm/adchoices

legacycares.orgfallingoutlgbtq.cominstagram: @fallingoutlgbtqpodtwitter: @fallinglgbtqMelissa Grove M.S., LPC has served as Executive Director of Legacy Counseling Center, Inc. since 1999, transforming the agency into the largest provider of mental health services for HIV+ people in the South. The Grace Project National Conference for Women Living with HIV she founded hosts 200 HIV+ women annually. Other projects include founding Legacy Founders Cottage, an AIDS care facility, and creating the centralized housing solution, Homebaseforhousing.org website. Her newest program, Legacy Master Leasing, sublets apartments to homeless people living with HIV. Ms. Grove speaks around the nation on issues pertaining to mental health, relationships, muscular dystrophy, HIV and chronic illness She additionally has a private therapy practice in Dallas, TX.She was named the 2014 Public Citizen of the Year through the North Central Texas National Association of Social Workers, and received the 2015 Black Tie Dinner Kuchling Humanitarian Award. Currently Ms. Grove has served on the National Consumer Advisory Committee for the Muscular Dystrophy Association and consults on the STS4HIV Project, a project of the National Institute on Drug Abuse.

Dr. Dan interviews author, editor, speaker, mom, podcaster, and disability/ability advocate Mindy Henderson about her new book THE TRUTH ABOUT THINGS THAT SUCK (and How To Make Them Suck Less) and much more. Mindy is the Editor-In-Chief of the Muscular Dystrophy Association's family of Quest content including the magazine, newsletter, blog, and podcast, and a powerful leader in disability/ability rights. A popular motivational speaker (Mindy gave her first speech at the age of four as the MDA State Ambassador for Texas for the Muscular Dystrophy Association!) Mindy teaches us how to try harder, never give up, and inspire others. Today, Dr. Dan and Mindy talk about many things that suck (job loss, parenting challenges, grief) and explain to listeners that the wrong mindset can be far more disabling than what any wheelchair or other challenges might represent. This episode will inspire listeners and give them a new perspective about the hard things in life. Mindy Henderson hosts ``The Truth About Things That Suck” podcast, is a guest contributor of “Morning Motivations” on CBS Austin, is a “Austin Woman to Watch” by Austin Woman Magazine, and one of the 50 winners of the inaugural 2022 Women of Influence awards by Success Magazine. For more information about Mindy and her work, and to follow her for Disability Pride Month (July), please visit: www.mindyhendersonco.com and on Instagram. Order Mindy's book here or wherever you buy your books. Listen to Mindy's podcast on Apple podcasts or on your favorite podcast platform.Email your parenting questions to Dr. Dan podcast@drdanpeters.com (we might answer on a future episode).Follow us @parentfootprintpodcast (Instagram, Facebook) and @drdanpeters (Twitter).Listen, follow, and leave us a review on Amazon Music, Apple Podcasts, Wondery, or wherever you like to listen!Don't forget, you can hear every episode one week early and ad-free by subscribing to Wondery+ in the @WonderyMedia App.For more information:www.exactlyrightmedia.com www.drdanpeters.comFor podcast merch:www.exactlyrightmedia.com/parent-footprint-shopSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In recognition of ALS Awareness Month, we get a report from the frontlines of ALS research, including new breakthroughs that impact patients. Dr. Sharon Hesterlee, the Chief Research Officer at the Muscular Dystrophy Association, gives us the big picture on ALS research and other neuromuscular diseases. Plus, Terry and Dr. Bob discuss new health legislation, including a bill that would ban the QALY, a discriminatory health care metric that hurts patients with rare or chronic diseases. And Kate speaks with Jenny Jones, an advocate for Familial Adenomatous Polyposis (FAP), about her advocacy work for this rare genetic condition. Hosts: Terry Wilcox, Executive Director, Patients RisingDr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public InterestKate Pecora, Field CorrespondentGuests: Sharon Hesterlee, Chief Research Officer at the Muscular Dystrophy AssociationJenny Jones, Patient Advocate and Author of Life's A PolypSara Healy, Patient CorrespondentJana Healy, Patient CorrespondentLinks: Terry Wilcox Applauds QALY Ban Bill - Patients Rising NowAmyotrophic Lateral Sclerosis (ALS) - Diseases | Muscular Dystrophy AssociationRodgers, Banks, & Wenstrup Lead QALY Ban to Affirm Every Person's Life has Value - Energy and Commerce CommitteeQALY Bill | H.R.7634 - Protecting Health Care for All Patients Act of 2022ICER to Assess Treatments for Amyotrophic Lateral SclerosisMOVR Data Hub (neuroMuscular ObserVational Research) | Muscular Dystrophy AssociationLife's A Polyp - Youtube Channel Need help?The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.orgHave a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?Drop us a line: podcast@patientsrising.orgThe views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.

Today I welcome Keisha Greaves. At 24 years-of-age, Keisha was diagnosed with Limb-Girdle Muscular Dystrophy; she later started the Girls Chronically Rock clothing line to inspire others with chronic illnesses to have confidence and not let their disability define who they are. Keshia is a motivational speaker, has a Master's in Business Management, and is the Massachusetts State Ambassador for the Muscular Dystrophy Association.

Chris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he'd get. After a car crash found him in the hospital on the receiving end of a random diagnosis of having extremely high creatine kinase levels, he was soon after diagnosed with Dysferlinopathy, specifically, Limb-Girdle muscular dystrophy, a rare muscle-weakening disease. No one asks to get sick but he went beast mode as a prolific blogger sharing his story and documenting the very real issues he had facing isolation, depression, anxiety, and a desire to make a difference for others like him.NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.