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 rare diseases and celebrating #WhatMakesMeRareSMA. Also, forums Director Kevin Schaefer shares how music plays a big part in his life in his latest column.
4 Maalis 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 founder of the nonprofit organization Working on Walking. Throughout this conversation, she talks about growing up with SMA Type 1, her college experiences, writing, and more. Are you interested in learning more about Spinal Muscular Atrophy? Please visit www.smanewstoday.com
3 Maalis 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 Today’s multimedia associate, Price Wooldridge, discuss how the Muscular Dystrophy Association leads in helping others with care centers, research, and a summer camp. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
2 Maalis 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 in the FIREFISH study. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
28 Helmi 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 discussed are accessible parking, sleepovers and product reviews.
26 Helmi 20206min
The Discovery of a Potential New SMA Genetic Modifier & Having a Great Deal of Strength
Having gone through a life threatening ordeal, forums moderator DeAnn Runge knows despite being physically weak she has a great deal of strength. As a reminder she has a little blue notebook. SMA News Today’s multimedia associate, Price Wooldridge, discusses the discovery of a potential new SMA genetic modifier. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
24 Helmi 20208min
How a CSF Protein Profile May Help Predict Spinraza Responses in Late-Onset SMA Patients
Forums Director Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how a CSF protein profile may help predict Spinraza responses in late-onset SMA patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
21 Helmi 20207min
Kevin Schaefer Reads His Week’s Motivational Post & Katie Napiwocki's Comeback as a Columnist
Forums Director Kevin Schaefer reads from this week’s motivational post in the SMA News Today forums and we're also happy to welcome Katie Napiwocki back into the rotation of SMA News Today columnists! In her latest column, Peering Through the Fog of Fear, she explains why she took a break from writing about SMA and how she came to the decision to stop her Spinraza treatments.
19 Helmi 20204min
