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)

Evrysdi Linked to Improved Motor Function in 2 Trials & Finding Community Support

Evrysdi Linked to Improved Motor Function in 2 Trials & Finding Community Support

SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi being linked to motor function improvements in a broad range of people with Spinal Muscular Atrophy (SMA). Also, Forums Dire...

23 Jun 202111min

SMA Added to North Carolina’s Newborn Screening Program

SMA Added to North Carolina’s Newborn Screening Program

SMA News Today’s multimedia associate, Price Wooldridge, discusses adding a Spinal Muscular Atrophy (SMA) newborn screening program in North Carolina. Also, DeAnn Runge shares, Halsey Blocher’s lates...

21 Jun 20218min

NICE Favors Zolgensma Being Added to England’s Public Health Program

NICE Favors Zolgensma Being Added to England’s Public Health Program

SMA News Today’s multimedia associate, Price Wooldridge, discusses NICE issuing its final Zolgensma appraisal for eligible Spinal Muscular Atrophy (SMA) patients. For the second time the Cure SMA con...

18 Jun 20217min

Navigating the Past Year Without Caregivers Has Been Challenging

Navigating the Past Year Without Caregivers Has Been Challenging

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup At a Time, “Navigating the Past Year Without Caregivers Has Been Challenging”. Also, Forums D...

16 Jun 20218min

#84: Scholar Rock Updates and Embracing the Growing Pains of New Wheels

#84: Scholar Rock Updates and Embracing the Growing Pains of New Wheels

In episode 84, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss some topics from the 2021 virtual Cure SMA conference and general news upd...

15 Jun 202147min

NICE Initially Against Adding Evrysdi to UK Public Health System

NICE Initially Against Adding Evrysdi to UK Public Health System

SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s NICE recommending against adding Evrysdi to the UK’s Public Health System. Also, DeAnn Runge reads Katie Napiwocki’s recen...

14 Jun 202113min

SMA and Sibling Relationships: A Brother’s Perspective & Sticking With Evrysdi

SMA and Sibling Relationships: A Brother’s Perspective & Sticking With Evrysdi

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “SMA and Sibling Relationships: My Brother’s Perspective”. Also, DeAnn Runge talks abou...

11 Jun 20216min

Asuragen’s Lab Test Can Speed Up Diagnosis of SMA Carriers and Patients

Asuragen’s Lab Test Can Speed Up Diagnosis of SMA Carriers and Patients

SMA News Today’s multimedia associate, Price Wooldridge, discusses Asuragen’s lab test which can speed up diagnosis of SMA carriers and patients. Also, Forums Director Kevin Schaefer reads a column f...

9 Jun 20219min

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