Spinraza for Most SMA Patients in China & Ben Mattlin's Book on Inter-abled Relationships

Spinraza for Most SMA Patients in China & Ben Mattlin's Book on Inter-abled Relationships

We discuss how China has approved Spinraza for most SMA patients. Also, Community Editor Kevin Schaefer reads from his review of a book about inter-abled relationships by Ben Mattlin. Mattlin is a Los Angeles-based writer with SMA Type 2, and this review is available on our main website and on our forums. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

Episoder(443)

Muscular Dystrophy Canada Funds Projects on Newborn SMA Screening

Muscular Dystrophy Canada Funds Projects on Newborn SMA Screening

SMA News Today’s multimedia associate, Price Wooldridge, discusses the award of funds by Muscular Dystrophy Canada for Spinal Muscular Atrophy (SMA) newborn screening. Also, Kevin Schaefer reads a c...

11 Aug 20218min

Spinraza Improves Lung Function in SMA Type 2 Child, Report Says

Spinraza Improves Lung Function in SMA Type 2 Child, Report Says

SMA News Today’s multimedia associate, Price Wooldridge, discusses improved lung function with Spinraza in a Spinal Muscular Atrophy (SMA) Type 2 child. Also, As DeAnn Runge awaits the arrival of her...

9 Aug 20217min

Why My Journey With Disability Pride Isn’t Linear & 31 Days of SMA Initiative

Why My Journey With Disability Pride Isn’t Linear & 31 Days of SMA Initiative

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup at a Time, “Why My Journey With Disability Pride Isn’t Linear”. Also, in recognition of SMA Aw...

6 Aug 20217min

Novartis Stopping Work on Branaplam as Oral SMA Therapy & 31 Days of SMA

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...

4 Aug 20216min

#87: Interview with Allie Williams, Vocal Coach and Disability Advocate

#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 acces...

3 Aug 202142min

Early Work Supports Apitegromab’s Safety as SMA Muscle Therapy & Jaco Robotic Arm Approval

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 ...

2 Aug 202110min

SadBaby Crowdfunding Aims to Help SMA Families & Accessibility, Disability Pride and Success

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 crea...

30 Jul 20217min

Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds

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 col...

28 Jul 20219min

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