#122: A Conversation With Rare Disease Advocates

#122: A Conversation With Rare Disease Advocates

In episode 122, host Kevin Schaefer talks with three of his coworkers from BioNews Inc., the parent company of SMA News Today. Brittany Foster is BioNews’ HR Coordinator, and she lives with pulmonary hypertension. Brad Dell is the Director of Community Content, and he lives with cystic fibrosis. Matt Lafleur is the Culture Coordinator, and he lives with Friedreich’s ataxia. In anticipation of Rare Disease Day 2023, these advocates share their experiences, pitfalls, and triumphs living with their respective conditions. ================================ Brittany’s column: https://pulmonaryhypertensionnews.com/recharged-and-rewired-brittany-foster/ Brad’s column: https://cysticfibrosisnewstoday.com/victorious-brad-dell/ Matt’s column: https://friedreichsataxianews.com/little-victories-matthew-lafleur/ ================================ 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

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Kevin Schaefer Talks About How The Past Few Months Have Been And How He’s Adapted to a New Normal

Kevin Schaefer Talks About How The Past Few Months Have Been And How He’s Adapted to a New Normal

Forums Director Kevin Schaefer talks about how the past few months have been for him, and how he’s adapted to a new normal. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.

30 Sep 20203min

Electric Bike Technologies Donates Liberty Trikes To Aid The Mobility Of Children With SMA

Electric Bike Technologies Donates Liberty Trikes To Aid The Mobility Of Children With SMA

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Electric Bike Technologies company donating Liberty Trikes to aid the mobility of children with Spinal Muscular Atrophy (SMA) and similar challenges. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

28 Sep 20205min

AveXis Now Known as Novartis Gene Therapies, Focus of Continuing Work

AveXis Now Known as Novartis Gene Therapies, Focus of Continuing Work

SMA News Today’s multimedia associate, Price Wooldridge, discusses AveXis, now known as Novartis Gene Therapies, focusing on continued work with genetic diseases. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

25 Sep 20204min

Eye Doctor Appointment Adventures, How Everything Takes Extra Effort In The World Of SMA & More

Eye Doctor Appointment Adventures, How Everything Takes Extra Effort In The World Of SMA & More

Forums Director Kevin Schaefer recaps his adventures during a recent eye doctor appointment, and talks about how everything takes extra effort in the world of SMA. DeAnn Runge talks about the latest SMA News Today forums topics such as getting a service dog, staying hydrated, preparing for a new wheelchair and more. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.

23 Sep 20205min

NICE Widens Its Zolgensma Appraisal Due to European Marketing Authorization

NICE Widens Its Zolgensma Appraisal Due to European Marketing Authorization

SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) widening its Zolgensma appraisal due to the European marketing authorization. DeAnn Runge shares what it was like to demo a JACO Robotic Arm. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

21 Sep 20206min

Activities Underway for Newborn Screening Awareness Month

Activities Underway for Newborn Screening Awareness Month

SMA News Today’s multimedia associate, Price Wooldridge, discusses the activities currently underway for Newborn Screening Awareness Month. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

18 Sep 20205min

Experiences With a BiPAP Machine And The Pros And Cons of Wearing One & Wardrobe Challenges

Experiences With a BiPAP Machine And The Pros And Cons of Wearing One & Wardrobe Challenges

Forums Director Kevin Schaefer talks about his experiences with a BiPAP machine, and the pros and cons of wearing one. DeAnn shares Halsey’s latest column that talks about wardrobe challenges. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.

16 Sep 20207min

#66: Talking About Evrysdi, SRK-015, and Recent Columns

#66: Talking About Evrysdi, SRK-015, and Recent Columns

In episode 66, hosts Kevin Schaefer and Michael Morale discuss news regarding the FDA-approved treatment Evrysdi, and Michael’s decision to switch to this therapy. They also talk about the clinical trial drug SRK-015, which is developed by Scholar Rock. Finally, Kevin reads excerpts from some of our recent columns. ================================ 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 http://www.smanewstoday.com

15 Sep 202041min

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