Sex And The Number of Copies of The SMN 2 Gene Can Influence Age of Onset for SMA Type 3 Patients
SMA News Today’s multimedia associate, Price Wooldridge, discusses how sex, and the number of copies of the SMN 2 gene influence age of onset for Spinal Muscular Atrophy Type 3 patients. Also, DeAnn Runge shares Katie Napiwocki’s recent column, Keeping the ‘Wild Green Thorns’ of Advocacy Fatigue at Bay. Katie has an eloquent way of describing some of the struggles those with disabilities go through and the feelings that arise from those situations. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
17 Touko 202113min
UK NICE Expands Access to Spinraza for SMA Type 3 & The Disappointment of a Jaco Robotic Arm Denial
SMA News Today’s multimedia associate, Price Wooldridge, discusses how UK NICE expands access to Spinraza for Spinal Muscular Atrophy (SMA) Type 3 patients. Also, DeAnn Runge talks about how disappointed she is that her appeal for the Jaco Robotic Arm was denied and how she’s not giving up. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
14 Touko 20216min
German Study Urges Newborn SMA Screening, Citing Better Outcomes & Managing Chaos
SMA News Today’s multimedia associate, Price Wooldridge, discusses a German study which recommends newborn screening for Spinal Muscular Atrophy (SMA), citing better outcomes. Also, Forums Director Kevin Schaefer reads a column about managing chaos when his caregiver’s car caught on fire. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
12 Touko 20219min
Grant Awarded to Find Affordable Treatments for Children & SMA Would You Rather
SMA News Today’s multimedia associate, Price Wooldridge, discusses a grant awared to find affordable treatments for children with Spinal Muscular Atrophy (SMA). Also, on the forums a fun game of SMA Would You Rather is going on. Every couple of weeks a question is posted to the SMA community. Questions range from temperature preference to caregiver attributes. Other forum topics include blocking out childhood trauma, the Jaco Robotic Arm process and coping mechanisms. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10 Touko 20215min
Novartis Poised for Phase 3b SMART Study of Zolgensma & SMA Adventures
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis is poised for their Phase 3b SMART study of Zolgensma. Also, DeAnn Runge shares a recent adventure she went on to a greenhouse in the country. She even talks about how she was caught off guard and how she handled the situation. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7 Touko 20219min
Danish Family Races to Raise $2.4M for Daughter’s Zolgensma Therapy & Staying True To Yourself
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Danish family raising $2.4 million for their daughter’s Zolgensma therapy. Also, Kevin Schaefer reads a column about staying true to himself and working in management. 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/
5 Touko 202112min
#81: Interview With Chaz Hayden - Writer and YouTuber with SMA
In episode 81, host Kevin Schaefer talks with Chaz Hayden from Princeton, New Jersey. Chaz is a writer and YouTuber with SMA. He talks about growing up with SMA, starting college at a young age, and his upcoming young adult novel. ================================ Link to Chaz’s YouTube channel: https://www.youtube.com/channel/UCwPeqLbJO9s2v9UDrdbzbnQ ================================ Music Credits: Alec's Band A Young Griffin Boyle In Drag ================================ To learn more about Evrysdi, please visit https://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit https://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit https://www.smanewstoday.com
4 Touko 202138min
#AANAM – Zolgensma May Lead to Faster, Greater Gains Than Spinraza
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma may lead to faster, greater gains than Spinraza in Spinal Muscular Atrophy (SMA) infants. Also, DeAnn Runge reads an article that really struck a chord with her. Halsey’s latest column, "It’s Time to Stop Stigmatizing Lifesaving Tracheostomy Tubes", dives into the unfavorable stigmatism that surrounds trachs and how that negatively impacts the disabled community. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
3 Touko 202111min
