#144: Doug McCullough, Advocate and Author With SMA

#144: Doug McCullough, Advocate and Author With SMA

In episode 144, host Kevin Schaefer talks with Doug McCullough from central New Jersey. The author of “A Billion People in the Shadows,” a new book about understanding disability, Doug previously worked at Johnson & Johnson Pharmaceuticals and has a background in public speaking. He talks about growing up with SMA type 3, navigating employment with a disability, and advocating for an inclusive society. Doug’s book: https://publishyourpurpose.com/books/a-billion-people-in-the-shadows-the-ultimate-1-hour-guide-to-understanding-disability/ ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums

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Saliva Samples May Help Diagnose SMA & Moving Into a New Home with SMA

Saliva Samples May Help Diagnose SMA & Moving Into a New Home with SMA

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study showed for the first time that genetic analysis of dried saliva spots correctly identified people with spinal muscular at...

30 Joulu 202111min

Poor Spinraza Adherence Leads to More Illness, Healthcare Costs & December Can Be Bittersweet

Poor Spinraza Adherence Leads to More Illness, Healthcare Costs & December Can Be Bittersweet

SMA News Today’s multimedia associate, Price Wooldridge, discusses how not having Spinraza therapy as prescribed – called treatment non-adherence – increases overall costs and healthcare use for SMA p...

27 Joulu 202111min

Treatment Delays May Be Less Important Than Family Support & Cherishing Togetherness During Holidays

Treatment Delays May Be Less Important Than Family Support & Cherishing Togetherness During Holidays

SMA News Today’s multimedia associate, Price Wooldridge, discusses how delays of Spinraza treatment due to COVID-19 seem to affect children's function less than weaker family support, small study fou...

23 Joulu 20218min

Phase 3 Trial of Apitegromab on Track for This Year & Managing Technological Issues With SMA

Phase 3 Trial of Apitegromab on Track for This Year & Managing Technological Issues With SMA

SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock plans to initiate a pivotal trial of its muscle-targeted therapy in non-ambulatory spinal muscular atrophy patients in 2...

20 Joulu 20216min

Neurofilaments and Nerve-muscle Test Show SMA Severity & SMA Adults Struggle to Access Evrysdi

Neurofilaments and Nerve-muscle Test Show SMA Severity & SMA Adults Struggle to Access Evrysdi

SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how blood levels of neurofilaments and the results of a nerve-muscle test may be biomarkers for SMA onset/severity a...

16 Joulu 202114min

#96: Chat with SMA Columnist Halsey Blocher and her Mother & Caregiver, Heather Dye

#96: Chat with SMA Columnist Halsey Blocher and her Mother & Caregiver, Heather Dye

In this episode, host Kevin Schaefer talks with Halsey Blocher and Heather Dye from Fort Wayne, Indiana. Halsey is a columnist for SMA News Today, and her mother Heather is a caregiver and advocate. D...

14 Joulu 202134min

Novartis Applauds Move to Reimburse Families for Zolgensma & Making Connections with SMA

Novartis Applauds Move to Reimburse Families for Zolgensma & Making Connections with SMA

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis Pharmaceuticals Canada applauds the province of Quebec for its move to offer public reimbursement for the SMA gene thera...

13 Joulu 20216min

Acute Liver Failure Warning Added to Zolgensma Label & Time Management and SMA

Acute Liver Failure Warning Added to Zolgensma Label & Time Management and SMA

SMA News Today’s multimedia associate, Price Wooldridge, discusses how the U.S. FDA has added acute liver failure to the list of concerns with use of Zolgensma in children with spinal muscular atrophy...

9 Joulu 20219min

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