Sma News & Perspectives

SMA News Today’s multimedia associate, Price Wooldridge, discusses a stem cell therapy which may benefit some Spinal Muscular Atrophy (SMA) Type 1 infants. Also, Kevin Schaefer shares his thoughts on Disability Pride Month. 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 the UK SMA Newborn Screening Alliance calling on people to take action and sign a petition requesting Spinal Muscular Atrophy (SMA) be added to newborn screening. Also, DeAnn Runge talks about their recent van troubles and the extra complexity disability adds to the situation. 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 many U.S. pediatricians fail to use developmental screening tools in diagnosing Spinal Muscular Atrophy (SMA). Plus, DeAnn Runge shares a recent article by Halsey Blocher, “The Evolution of Adult Programs at the Cure SMA Conference.” Halsey reminisces on past conferences and talks about how and why the programs have evolved over the years. 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 Texas adding Spinal Muscular Atrophy (SMA) to its newborn screening program. Also, Forums Director Kevin Schaefer reads a column about making churches more accessible. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 85, host Kevin Schaefer talks with Mikey and Noelle Hazel from Union, New Jersey. Mikey and Noelle are siblings who both have SMA Type II. They talk about growing up with SMA together, combating ableism, and entering a new chapter in their lives. ================================ Link to Mikey’s YouTube Channel: https://www.youtube.com/channel/UCNx-ePIR4bO2tPKCSfPb9fQ ================================ 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 Japan’s approval of Evrysdi as the first at-home, oral Spinal Muscular Atrophy (SMA) treatment. Also, DeAnn Runge talks about her quest to start pool therapy and the challenges she’s faced with. It’s just not as easy as dipping your toe in the water. 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 Zolgensma treatment demonstrating major milestones being met in infants with Spinal Muscular Atrophy (SMA). Also, DeAnn shares with you Alyssa’s latest column, “Actually, My Disease Does Define Me,” where she talks about the influence SMA has had on her life. 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 newborn screening for Spinal Muscular Atrophy (SMA) in Massachusetts being seen as highly accurate and effective. Forums Director Kevin Schaefer reads a column by Ari Anderson about stepping outside his comfort zone to ask for extra help. Link to Ari’s column: https://smanewstoday.com/columns/2021/06/24/asking-for-help-new-highs/ 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 children with Spinal Muscular Atrophy (SMA) taking Spinraza, leanding to better swallowing and farther walking. Also, not only are the forums a great place to learn, they’re a fabulous place to share where members can really relate to each other in a unique way. New categories have been added that emphasize that fact. Weekly Wins is a space to share weekly highlights and generally positive things. Would You Rather is new as well. In this forum there will be questions where you have to choose between two hypothetical situations. One of the biggest topics recently in the general forum is caregivers. Specifically how challenging it is to find them right now. 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 meaningful improvements in motor abilities evident with apitegromab treatment in later-onset Spinal Muscular Atrophy (SMA) patients. Also, DeAnn Runge shares her adventure picking honeyberries and the challenges she faced. 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 Evrysdi being linked to motor function improvements in a broad range of people with Spinal Muscular Atrophy (SMA). Also, Forums Director Kevin Schaefer reads a column about finding community support through this year’s Cure SMA virtual conference. Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/ 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 adding a Spinal Muscular Atrophy (SMA) newborn screening program in North Carolina. Also, DeAnn Runge shares, Halsey Blocher’s latest column, “Finding a Bit of Myself in Truman Burbank,” where she draws parallels between her life and the movie The Truman Show. 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 NICE issuing its final Zolgensma appraisal for eligible Spinal Muscular Atrophy (SMA) patients. For the second time the Cure SMA conference was held virtually. DeAnn Runge talks about what she gained from the conference. She also talks about her latest YouTube video that shows what’s inside a care package from Cure SMA. 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, reads the column by Alyssa Silva, Life, One Cup At a Time, “Navigating the Past Year Without Caregivers Has Been Challenging”. Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about the power of saying yes. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 84, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss some topics from the 2021 virtual Cure SMA conference and general news updates. The team also talks about restrictions being lifted across the U.S. and the impact of this on the SMA community. Finally, they highlight some recent columns from our main website. ================================ Links to news stories and forum topics: - Apitegromab Put on FDA’s Fast Track https://smanewstoday.com/news-posts/2021/05/26/muscle-directed-therapy-apitegromab-put-on-fda-fast-track/ - SMA Added to North Carolina’s Newborn Screening Program https://smanewstoday.com/news-posts/2021/06/09/sma-added-north-carolina-newborn-screening-program/ - Discussion on the film "Sound of Metal" https://smanewstoday.com/forums/forums/topic/have-you-watched-sound-of-metal/ ================================ Links to columns: - ”Embracing the Growing Pains of New Wheels” by Katie Napiwocki https://smanewsto

SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s NICE recommending against adding Evrysdi to the UK’s Public Health System. Also, DeAnn Runge reads Katie Napiwocki’s recent column, “Embracing the Growing Pains of New Wheels.” From the hesitancy to start the process to finding ways to adjust once the transition happens DeAnn can relate to it all. Read Katie's column here: https://smanewstoday.com/columns/2021/06/03/new-power-wheelchair-embracing-growing-pains/ 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, reads the column by Halsey Blocher, From Where I Sit, “SMA and Sibling Relationships: My Brother’s Perspective”. Also, DeAnn Runge talks about how she came to the decision to stick with Evrysdi. It was a difficult decision but she’s happy with her choice. 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 Asuragen’s lab test which can speed up diagnosis of SMA carriers and patients. Also, Forums Director Kevin Schaefer reads a column from Alyssa Silva about reflecting on her diagnosis day. You can read Alyssa’s column here: https://smanewstoday.com/columns/2021/04/30/reflecting-diagnosis-day-30-years-later/ 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 stress-induced protein may serve as a new Spinal Muscular Atrophy (SMA) biomarker in infants. Also, SMA News today brings a variety of the most up to date content that relates to the SMA community. Between columnists, social media platforms, news and research all aspects of SMA life are covered. To help continue bringing relevant content please take the survey: https://bionews.sjc1.qualtrics.com/jfe/form/SV_aY8P54qxfvCLPgi 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 Apitegromab being granted a fast track designation by the U.S. Food and Drug Administration. DeAnn Runge talks about her upcoming appointment with her neurologist to discuss continuing with Evrysdi or switching back to Spinraza. She dreads making the wrong decision. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/