COVID19, Spinraza, Bloating, SPC’s, Being Spontaneous & Transferring Out Of Wheelchair To Take a Nap
In the forums a topic of discussion has been the thing that’s on everyone’s mind, the Novel Coronavirus, also known as COVID19. Spinraza has also been discussed. Other topics include bloating, SPC’s...
11 Mar 20205min
Being Spontaneous With SMA & How Body Composition May be a Biomarker of Motor Function in SMA
Spontaneity can be difficult when you have SMA. Sometimes it even takes planning. Forums moderator DeAnn Runge shares how she does it and is looking for advice on how to be even more spontaneous. S...
9 Mar 20206min
Maintaining Long-Distance Friendships & MDA Executive’s Discussion of Gene Therapies
Forums Director Kevin Schaefer talks about maintaining long-distance friendships, particularly with people in the SMA community. SMA News Today’s multimedia associate, Price Wooldridge, details an MD...
6 Mar 20206min
Celebrating Rare Disease Day 2020 with #WhatMakesMeRareSMA & How Music Plays a Big Part in Life
February 29th was recognized as Rare Disease Day across the world. SMA News Today columnists shared what this day meant to them. A social media campaign was also successful in bringing awareness to ...
4 Mar 20206min
#53 - Interview with Alyssa Silva
In episode 53, host Kevin Schaefer interviews our very own Alyssa Silva. Alyssa is from Cumberland, Rhode Island, and she is a columnist and forums moderator here at SMA News Today. She’s also the fou...
3 Mar 202044min
Public Interactions with People With Disabilities & Muscular Dystrophy Association Helping Others
When it comes to public interactions with people who have disabilities there are no set rules. As someone who has a disability, DeAnn shares her thoughts on this topic. Also, listen to SMA News Toda...
2 Mar 20207min
Risdiplam Success in Treating SMA Type 1 Babies in FIREFISH Study & Kevin's Spinraza Injection
Forums Director Kevin Schaefer talks about his most recent Spinraza injection and SMA News Today’s multimedia associate, Price Wooldridge, discusses the Risdiplam success in treating SMA Type 1 babies...
28 Feb 20205min
Talking About Rare Disease Day & Accessible Parking, Sleepovers with SMA and Product Reviews
Forums Director Kevin Schaefer talks about the upcoming Rare Disease Day, and what it means to him. Also, DeAnn Runge shares the latest activity going on in the forums. Among the topics being discus...
26 Feb 20206min
