Sma News & Perspectives

SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock plans to initiate a pivotal trial of its muscle-targeted therapy in non-ambulatory spinal muscular atrophy patients in 2021. Technology is something DeAnn relies on to live independently. When it isn’t functioning properly it can be a hassle. DeAnn talks about issues she’s having with her internet and what she must do to make it work. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how blood levels of neurofilaments and the results of a nerve-muscle test may be biomarkers for SMA onset/severity and treatment response. Also, Sherry Toh’s SMA News Today article, “As an Adult With SMA, I Need Access to Evrysdi, Too,” pulls at your heartstrings. DeAnn can relate to those feelings as it reminds her of when she was trying to access Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In this episode, host Kevin Schaefer talks with Halsey Blocher and Heather Dye from Fort Wayne, Indiana. Halsey is a columnist for SMA News Today, and her mother Heather is a caregiver and advocate. During this conversation, they talk about the nuances of living with SMA, transitioning to adulthood, and advice they have for others in the SMA community. ================================ Halsey’s column: https://smanewstoday.com/from-where-i-sit-halsey-blocher/ Heather’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/2020/08/14/31-days-of-sma-heather-halsey-dye/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis Pharmaceuticals Canada applauds the province of Quebec for its move to offer public reimbursement for the SMA gene therapy Zolgensma. Also, making meaningful connections has become difficult for DeAnn Runge over the past several years. She explains why that is and shares some of her recent experiences. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses how the U.S. FDA has added acute liver failure to the list of concerns with use of Zolgensma in children with spinal muscular atrophy. Plus, the value of time can be a difficult concept to master. In Ari Anderson’s recent article, “Time Is a Balancing Act, Let’s Learn How to Do It Together,” he talks about the value of time and how he prioritizes his precious time. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses how better/stable motor function and breathing, along with oral use, is ranked high in a UK survey of SMA type 2 and 3 adult patients, caregivers. Plus, after completing her annual neurology visit and assessments DeAnn talks about why no change is a good thing where SMA is concerned. She gives an update on where she’s at in her treatment journey and talks about her plan going forward. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge discusses how a recent study found that Tranexamic acid effectively reduced blood loss by over 50% during surgery to correct scoliosis due to spinal muscular atrophy. Also, we all know that self-reflection can be challenging. In Brianna Albers' latest article, she reflects on a reality that requires her to make a change. DeAnn Runge discusses Brianna's column, “To Protect My Emotional Wellness, I’m Letting Myself Take a Break” on this audio news episode. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 95, host Kevin Schaefer talks with the creators of the new song “Spaces.” Done in collaboration with Genentech, this production was created entirely by people from the SMA community. James Ian is a singer, songwriter, and actor from Los Angeles, California. With Spaces, he wanted to create a song specifically for the disability community. Dominick Evans is a trans, non-binary creator originally from the Midwest. He has a BFA in Film and is a filmmaker, writer, gamer, streamer, YouTuber, parent, speaker, and activist. Zack and Zarek Elizondo are brothers, YouTubers, podcasters, and graphic designers. You can learn more about their lives and work on their website, the Sweet Life of Zack and Zarek. ================================ Link to “Spaces” music video: https://www.youtube.com/watch?v=ZLyRpDn9bTo ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding S

SMA News Today’s multimedia associate Price Wooldridge, discusses an article on how spinal deformities and weak trunk muscles put substantial limits on the functional abilities of SMA children and need to be addressed. Plus, DeAnn Runge knows all too well the downside of the internet. After all her Facebook account was just hijacked. That’s why she wants to share Kevin Schaefer’s recent article "The Human Side of the Internet"; it sheds a positive light on what can be a dark space. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Roche and Genentech will initiate a Phase 2/3 clinical trial to evaluate the safety and efficacy of GYM329 in combination with Evrysdi in children with SMA. Also, after thinking this Thanksgiving would resemble some normalcy, Covid throws a wrench into DeAnn’s family plans. She explains why their plans have changed and her feelings regarding it. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses how All Wheels Up recently celebrated the release of a transportation review board study that showed the feasibility of accessible aircraft. Also, nothing’s ever easy, or so it seems for DeAnn Runge. She talks about the process to get a back door opener replaced and the challenges she faces while waiting for it. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how administering Spinraza by subcutaneous intrathecal catheter improved upper limb function in some spinal muscular atrophy patients. Plus, there are differing opinions on how to refer to a person with a disability. Halsey Blocher's recent column discusses this topic and talks about how there's not one right answer. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 94, host Kevin Schaefer talks with Pamela K. Muhammad from Monroe, Louisiana. Pamela is the author of two books, and she is currently in the process of launching her own fashion accessory business. She talks about living independently with SMA, combatting disability stereotypes, and shares advice for others in the community. ================================ Pamela’s poetry book: https://www.amazon.com/Pam-Allahs-Poetry-Heart-Collection-Inspires/dp/170241292X/ref=sr_1_1?dchild=1&qid=1635261256&refinements=p_27%3APamela+K.+Muhammad&s=books&sr=1-1&text=Pamela+K.+Muhammad Pamela’s memoir: https://www.amazon.com/Loving-Skin-Im-Visions-Life/dp/B08HGTSZXT/ref=sr_1_2?dchild=1&qid=1635261337&refinements=p_27%3APamela+K.+Muhammad&s=books&sr=1-2&text=Pamela+K.+Muhammad ================================ To learn more about Evrysdi, please visit www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums =======

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study in China suggests a high prevalence of anxiety and depression among school-age children and adolescents with spinal muscular atrophy. Also, DeAnn Runge shares the topic of her recent vlog. She talks about the feelings associated with losing abilities and describes how she overcame the obstacles that threatened her hobby. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge discusses how a pilot of newborn screening for spinal muscular atrophy in Liege province became in 3 years a government-run program for Southern Belgium. Also, Katie Napiwocki's columns always have DeAnn reflecting on her own SMA journey. Today she reads the article, "The Asymmetries of a Physical Therapy Routine and a Koala’s Conquest," where Katie reflects on her past physical therapy, what she's learned from it and how a koala has inspired her. Not only can DeAnn draw parallels, she has a newfound respect for her childhood stuffed koala ironically called Katie. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, shares the story of Ben Lou, an 18-year-old with SMA type 2, mentally as strong as they come: accepted to three top US universities, and that is now attending MIT. Plus, DeAnn talks about making her world more accessible even if that means inconveniencing others. Giving some examples she demonstrates the conflicting feelings she faces. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses how in an open letter to a U.S. Department of Transportation Advisory Committee, Cure SMA called for better wheelchair storage for air travel. Plus, Alyssa Silva's recent column hits close to home for DeAnn. She shares her article that talks about how overwhelming SMA medical issues can be and encourages listeners to continue the discussion over on SMA News Today forums. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 93, host Kevin Schaefer talks with Garrett Lerner from Los Angeles, California. Garrett is the co-creator and co-showrunner of the NBC drama series “Ordinary Joe,” and he is a father to a son with SMA type II. He talks with Kevin about the origins of the show and its disability representation, his family life, and the importance of seeing disabled characters on screen. ================================ Watch Ordinary Joe: https://www.nbc.com/ordinary-joe ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how a Canadian agency found evidence lacking to support gene therapy reimbursement in older babies and toddlers with spinal muscular atrophy. Plus, DeAnn Runge talks about how sometimes being inundated with all things SMA gets to be too much for her. Today she's talking about a topic totally unrelated to SMA to take her mind off it for a brief moment. She's looking for creative input for a project she has in the works. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses an article on how Scholar Rock plans to initiate a Phase 3 trial of apitegromab in spinal muscular atrophy types 2 and 3 patients unable to walk by year's end. Also DeAnn Runge gives an update on the latest happenings over on the forums. Relevant topics like the vaccines, the latest cell phones and accessibility apps are being discussed as well as the new TV show Ordinary Joe. Finding caregivers, dietary issues and October being National Disability Employment Awareness Month are also at the forefront of conversation. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/