#54 - Roundtable About Corona Virus
In episode 54, Michael and I discuss the global outbreak of Coronavirus (COVID-19). We share our tips for how others in the SMA community can best protect themselves, as well as their caregivers. Plea...
17 Mars 202018min
Risdiplam Under FDA Review & How the Lack of SMA Protein May Also Directly Contribute to SMA
Anticipation is growing as Roche/Genentech's treatment risdiplam, the first oral medication to treat SMA, is under FDA review. SMA News Today’s multimedia associate, Price Wooldridge, discusses how t...
16 Mars 20207min
Importance of Physical Therapy & Institute for Gene Therapies to Modernize Reimbursement Framework
SMA News Today’s Senior Director of Multichannel Content, Michael Morale, discusses the importance of physical therapy, and how physical therapy can not only help avoid problems, but also correct some...
13 Mars 20205min
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 Mars 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 Mars 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 Mars 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 Mars 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 Mars 202044min
