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    Vacationing With SMA as Your Travel Companion

    My family and I have just returned home from a fun-filled, relaxing vacation in Orlando, Florida. We haven’t taken a vacation in over two years, and it was long overdue. Vacations offer opportunities to explore a different part of the world and take a break from normal routines. But sometimes there are things you can’t […]
    The post Vacationing With SMA as Your Travel Companion appeared first on SMA News Today.

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    Women’s 100M Butterfly – S8 | Final | Tokyo 2020 Paralympic Games

    Gold: Jessica Long Silver: Viktoriia Ishchiulova Bronze: Laura Carolina Gonzalez Rodriguez The International Paralympic Committee’s vision is to make for an inclusive world through Para sport. Our mission is to lead the Paralympic Movement, oversee the delivery of the Paralympic Games and support members to enable Para athletes to achieve sporting excellence. SUBSCRIBE for more great…

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    NCIL and the Ford Foundation: Partnering to Create an Intersectional Future for the Disability Community

    The National Council on Independent Living (NCIL) is pleased to announce our newest partnership with the Ford Foundation that will both support the development of the next generation of disability advocates and enhance our efforts to fully establish Independent Living (IL) as a part of the disability justice movement. In recent history, there have been […]

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    AXSChat Podcast with Kate Nicholson, Dawn Gibson and Charis Hill

     Kate Nicholson, JD, is a health policy and civil rights attorney and a nationally-recognized expert on the Americans with Disabilities Act (ADA). She served in the U.S. Department of Justice’s civil rights division for 18 years, where she litigated and managed cases, coordinated federal disability policy, and drafted the current ADA regulations.Kate developed intractable pain after a surgical mishap left her unable to sit or stand and severely limited in walking for many years. During those years, she used opioid pain medication integrated with adjunctive therapies in order to continue to work and function. She gave the TEDx talk, What We Lose When We Undertreat Pain, and speaks widely at universities and conferences and to physicians groups.Kate has published pieces on this topic in The Washington Post, the LA Times, The Chicago Tribune, the Miami Herald, the Hill, and STATnews, among others, and is writing a book. She has appeared on public radio, Stand Up with Pete Dominick, and The Roy Green Show, and has given interviews to Fox News, Vice, BBC, and others.She is Co-Chair of the Chronic Pain/Opioid Task Force for the National Council on Independent Living (NCIL) and was recently appointed to the Opioid Workgroup of the Centers for Disease Control and Prevention. She regularly collaborates with drug policy, civil rights, disability rights and pain awareness organizations. She is also a 2019-20 Mayday Pain & Society Fellow.Kate was a Senior Fellow at Dartmouth College and is a graduate of Harvard Law School. Dawn Gibson is a health writer and disability activist best known for her work with arthritis patients, chronic pain, less evident disabilities, and eldercare. Dawn live tweets her advocacy trips and vacations to normalize chronic pain, disability travel accommodations, and highlight disabled folks moving freely through society.She founded the Spoonie Chat Twitter community in 2013 and remains active in various disability communities. Some of her favorite things include Detroit Tigers baseball on the radio, hand raising butterflies, and Christmas trees and faux gingerbread houses. Dawn dyslexia, spondyloarthritis, and serious food allergies. Charis Hill is an award-winning queer disabled chronic disease advocate, writer, speaker, and model living with Axial Spondyloarthritis (formerly Ankylosing Spondilitis), autism, major depressive disorder, anxiety, and post-traumatic stress disorder. Charis’ story has been featured in dozens of publications and media outlets including Arthritis Today magazine, Mother Jones, CNBC, the Associated Press, and in the documentary film Becoming Incurable. Charis has also been instrumental in creating spondyloarthritis disease treatment guidelines; designing and conducting patient-centered rheumatological research; forming international criteria for disease treatment outcomes; and creating research guidelines. They are involved in national/international advocacy, and are the co-founder of #HighRiskCovid19. 

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    24 September 2021

    (…more) Originally published as 24 September 2021 at ride with disability

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    RespectAbility Advocates for Colorado to Close Labor Force Gaps for People with Disabilities

    Denver, CO, September 23 – This week, the Colorado Workforce Development Council (CWDC) met to discuss the status of workforce practices of the Centennial State. In response to this meeting, RespectAbility, a national nonpartisan nonprofit organization, submitted testimony on how to implement best practices, advocate for greater inclusion and improve the standing of people with disabilities [click to continue…]
    The post RespectAbility Advocates for Colorado to Close Labor Force Gaps for People with Disabilities appeared first on Respect Ability.

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    Spinraza RESPOND Trial Enrolling Children Not Helped by Zolgensma

    Biogen is continuing to actively recruit patients for its Phase 4 RESPOND trial, which is evaluating the benefits of Spinraza (nusinersen) in infants and children with spinal muscular atrophy (SMA) who responded poorly to the gene therapy Zolgensma. Participants are now being enrolled at 10 sites in the U.S. and one in Italy, with more sites expected to open; further […]
    The post Spinraza RESPOND Trial Enrolling Children Not Helped by Zolgensma appeared first on SMA News Today.

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    Disability and Progress-September 23,2021-An Update on Alzheimer’s

    This week, Dr. William Mantyh will join us, to discuss Alzheimer’s, what’s happening now, and how did the pandemic affect the disease.

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    Glam for the Scan: How One Outfit Changed Everything

    While I can’t speak on behalf of every medical professional I’ve come across in my lifetime (truth be told, that’d be quite a large number), I wouldn’t be surprised if they thought I didn’t own many clothes. I wouldn’t blame them. After all, I’ve been wearing the exact same pair of yoga pants and rotating […]
    The post Glam for the Scan: How One Outfit Changed Everything appeared first on SMA News Today.

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    Wheelchair Tennis Overall Highlights | Tokyo 2020 Paralympic Games

    The International Paralympic Committee’s vision is to make for an inclusive world through Para sport. Our mission is to lead the Paralympic Movement, oversee the delivery of the Paralympic Games and support members to enable Para athletes to achieve sporting excellence. SUBSCRIBE for more great Paralympic content ▶ https://www.youtube.com/c/paralympics More information about the Paralympics can be found on…

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    The Inclusive Public Space (IPS) Team is Making a Worldwide Difference

    Are you a person with a disability, mobility challenges, use a stroller, or walker? Than listen in to find out this accessibility project is looking at accessibility across five countries to improve our lives in public spaces.  Dr. Orchard, Dr. Eskyte, and Professor Lawson are working on a pedestrian accessibility project across 5 countries and need your input. To find out more about our guest, visit these links:Website: https://inclusivepublicspace.leeds.ac.uk/Email: IPS.project@leeds.ac.uk Expression of Interest form (for pedestrian participants): https://leeds.onlinesurveys.ac.uk/expression-of-interest_usa Phone: 678-701-3771Twitter: @IPS_LeedsFacebook: IPS.LeedsWant to be a guest on our show?  Connect with us at: https://www.abilitiesinmotion.org/podcastFacebook: https://www.facebook.com/AbilitiesinMotionPALinkedIn: https://www.linkedin.com/company/abilitiesinmotion/Twitter: https://twitter.com/BerksCountyCIL?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5EauthorInstagram: https://www.instagram.com/instaaim/

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    Inclusion During Simchat Torah: By Nicole Olarsch and Matan Koch

    Simchat Torah (which translates to Rejoicing with the Torah in English) is a Jewish holiday which occurs at the end of Sukkot. Filled with music, dancing and beautiful imagery, it is a time of celebration that includes reading the end of Deuteronomy, the beginning of Genesis, and dancing in seven traditional Hakafot (circular dances) each [click to continue…]
    The post Inclusion During Simchat Torah: By Nicole Olarsch and Matan Koch appeared first on Respect Ability.