Novartis Stopping Work on Branaplam as Oral SMA Therapy & 31 Days of SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis stopping work on the development of Branaplam as an oral treatment for Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer reads a story from our 31 Days of SMA series. This piece, written by Alvaro Cheherlian, is about being an entrepreneur with SMA. Link to 31 Days of SMA series: https://smanewstoday.com/category/31-days-of-sma/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
4 Elo 20216min
#87: Interview with Allie Williams, Vocal Coach and Disability Advocate
In episode 87, host Kevin Schaefer talks with Allie Williams from Stillwater, Oklahoma. Allie is a vocal coach and she has SMA Type II. She talks about her lifelong musical journey, dealing with accessibility issues as a college student, and advice she has for others with SMA. ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
3 Elo 202142min
Early Work Supports Apitegromab’s Safety as SMA Muscle Therapy & Jaco Robotic Arm Approval
SMA News Today’s multimedia associate, Price Wooldridge, discusses early work that supports Apitegromab’s safety as a Spinal Muscular Atrophy (SMA) therapy. Also, after a yearlong battle DeAnn Runge learns she’s been approved to receive the Jaco Robotic Arm. She reflects on the process and shares the emotions that come along with it. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
2 Elo 202110min
SadBaby Crowdfunding Aims to Help SMA Families & Accessibility, Disability Pride and Success
SMA News Today’s multimedia associate, Price Wooldridge, discusses SadBaby, an organization raising donations to support children with Spinal Muscular Atrophy (SMA). Also, SMA News Today content creator DeAnn Runge gives a snapshot of the columnists at SMA News Today and their recent contributions. Topics range from relationships with others to the relationship with ones SMA body. Accessibility, Disability Pride and how success should be viewed are all among subjects discussed in the latest columns. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
30 Heinä 20217min
Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds
SMA News Today’s multimedia associate, Price Wooldridge, discusses a partnership which aims to lower out-of-pocket costs for rare disease medications. Also, Forums Director Kevin Schaefer reads a column by Sherry Toh about her love for video games. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
28 Heinä 20219min
‘Wearable Cyborg’ Helps Improve Walking Ability And Muscle Strength
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a wearable cybernetic leg significantly improves walking ability for people with neuromuscular disabilities such as Spinal Muscular Atrophy (SMA). Also, DeAnn Runge shares stories that could be considered inspiration porn although she views them as inspirational because they serve a purpose. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
26 Heinä 20218min
VRK1 Mutations Were Found in Two Adult-Onset SMA Hispanics & the SSI Restoration Act of 2021
SMA News Today’s multimedia associate, Price Wooldridge, discusses how VRK1 mutations were found in two adult-onset Spinal Muscular Atrophy (SMA) Hispanics. In the forums there are a lot of great discussions going on. A topic creating a lot of buzz is the SSI Restoration Act of 2021. July being Disability Pride month is another topic with a lot of interest. Other topics include disability portrayed in media, what the line is between inspirational and inspiration porn and Spinraza injection day woes. There are also members in various stages of pursuing a Jaco robotic arm. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/ Visit the SMA forums https://smanewstoday.com/forums/
23 Heinä 20219min
COVID-19 Infection Turns Severe in SMA Type 1 Child & Treating Your Body Right
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a COVID-19 infection turns severe in a Spinal Muscular Atrophy (SMA) Type 1 child. News article: https://smanewstoday.com/news-posts/2021/07/14/covid-19-severe-fatal-inflammation-sma-type-1-child/ Forums Director Kevin Schaefer reads a column by Ari Anderson about treating your body right. Link to Ari’s column: https://smanewstoday.com/columns/2021/07/15/building-healthy-relationship-your-body/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
21 Heinä 202110min
