Blood NfL Levels May Mark SMA Severity, Therapy Efficacy in Very Young
SMA News Today’s multimedia associate, Price Wooldridge, discusses how blood neurofilament light chain (NfL) levels may mark Spinal Muscular Atrophy (SMA) severity and therapy efficacy. Although she finds travel difficult for herself, DeAnn Runge loves to hear about others adventures. Today she reads Halsey Blocher’s column, “Vacationing With SMA as Your Travel Companion,” where she shares about her family trip to Florida and tips to make the journey as easy as it can be. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
30 Sep 202114min
Variant in Androgen Receptor Might Be Useful in Treating SBMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses a variant of an androgen receptor protein which may be useful in treating Spinal and Bulbar Muscular Atrophy (SBMA). Also, on what could possibly be the last nice day of the season, DeAnn Runge heads out on an adventure with her mom. She talks about what aspects were fun and also some challenges they faced throughout the day. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
27 Sep 20219min
Cure SMA And Cytokinetics Renew Joint Efforts to Raise Funds and Awareness
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Cure SMA and Cytokinetics renew their joint efforts to raise funds and awareness for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reads Alyssa Silva’s latest column where she shares about a positive interaction with a child. Odds are that if you’re in a wheelchair you’ve been stared at, or even shied away from. It can be frustrating to say the least. Alyssa has a technique that engages children in conversation to foster acceptance regarding disability. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
23 Sep 20219min
#90: Interview With Judy Heumann, Disability Rights Activist
In episode 90, host Kevin Schaefer talks with Judy Heumann, who’s originally from Brooklyn, New York. A pioneer of the disability rights movement, she is one of the primary subjects of the 2020 Netflix documentary Crip Camp. In the United States, she served in the administrations of Presidents Bill Clinton and Barack Obama. In 2020, she published her memoir Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. ================================ Judy’s book: https://www.amazon.com/Being-Heumann-Unrepentant-Disability-Activist/dp/0807019291 Judy’s Instagram: https://www.instagram.com/theheumannperspective/ ================================ 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
21 Sep 202142min
SMA Caused by Mutation in ASAH1 Gene Reported in Romania
SMA News Today’s multimedia associate, Price Wooldridge, discusses a first-ever case in Romania of Spinal Muscular Atrophy (SMA) caused by a mutation in the ASAH1 gene. Plus, DeAnn Runge talks about a topic that’s keeping her up at night. She’s concerned she could lose 75% of her caregivers. She also shares about her next vlog regarding her views on SMA treatment effectiveness. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
20 Sep 20217min
2 SMN2-targeting Therapies Work Better Than 1 in Mouse Model
SMA News Today’s multimedia associate, Price Wooldridge, discusses how, according to a mouse model, two SMN 2 targeting therapies work better than one. Also, heading into the weekend, DeAnn Runge wanted to share Brianna Albers’ latest column, “Today and Every Day, I Choose Rest.” Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
16 Sep 202112min
Indigenous Groups in Canada May Have Highest Rate of SBMA in World
SMA News Today’s multimedia associate, Price Wooldridge, discusses indigenous groups in Canada having the highest rate of spinal and bulbar muscular atrophy (SBMA) in the world. DeAnn Runge talks about how a recent news story regarding the Miami International Airport installing wheelchair charging stations got under her skin. She points out how difficult air travel is for the disabled community. Not only does one risk injury to themselves but also damage to their wheelchairs when they travel by plane. She feels the industry needs to address the issue of restrictive air travel. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
13 Sep 20219min
Mothers Want to Improve Children’s Quality of Life & Making Friends as an Adult With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how mothers of Spinal Muscular Atrophy (SMA) children and adolescents what to improve their children’s quality of life. DeAnn Runge reads a column by Alyssa Silva that she relates to on many levels. It’s titled, “The Challenges of Making Friends as an Adult With SMA.” Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9 Sep 202112min
