Japan Approves Evrysdi as First At-home, Oral SMA Treatment
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/
5 Juli 20216min
Major Developmental Milestones Met in Infants, Zolgensma Data Show
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/
2 Juli 202112min
Newborn Screening in Massachusetts Seen as Highly Accurate And Effective
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/
30 Juni 202110min
Spinraza Leads to Better Swallowing, Farther Walking & Weekly Wins: Sharing Wins in Our Forums
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/
28 Juni 20217min
Apitegromab Safely Increases Motor Abilities in SMA Types 2, 3
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/
25 Juni 20218min
Evrysdi Linked to Improved Motor Function in 2 Trials & Finding Community Support
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/
23 Juni 202111min
SMA Added to North Carolina’s Newborn Screening Program
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/
21 Juni 20218min
NICE Favors Zolgensma Being Added to England’s Public Health Program
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/
18 Juni 20217min
