Genetic Analysis of Families Finds Novel Mutations in SMA & The Lack Of Privacy When Living With SMA

Genetic Analysis of Families Finds Novel Mutations in SMA & The Lack Of Privacy When Living With SMA

SMA News Today’s multimedia associate, Price Wooldridge, discusses a genetic analysis of families with a member affected by Spinal Muscular Atrophy (SMA) which finds novel mutations in SMA patients. SMA News Today’s forums moderator, DeAnn Runge shares her experiences with the lack of privacy that can be an issue when you have 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 http://www.smanewstoday.com

Episoder(444)

#133: Rebecca Mulhall, Parent of Twins With SMA

#133: Rebecca Mulhall, Parent of Twins With SMA

In episode 133, host Kevin Schaefer talks with Rebecca Mulhall from Cleveland, Ohio. Rebecca has three kids, and her youngest two are twins with SMA. Her son with SMA also has Down syndrome. Rebecca t...

7 Nov 202332min

#132: Collin Pollock, Business Owner With SMA

#132: Collin Pollock, Business Owner With SMA

In episode 132, host Kevin Schaefer talks with Collin Pollock from Garden Grove, California. Collin and his wife, Kyla, run a barbeque sauce business called WheelyQ. He discusses becoming a business o...

4 Okt 202329min

#131: Candis Welch, Disability Advocate and Ms. Wheelchair California

#131: Candis Welch, Disability Advocate and Ms. Wheelchair California

In episode 131, host Kevin Schaefer talks with Candis Welch from Los Angeles, California. A disability advocate, DEI practitioner, and consultant, Candis won the 2023 Ms. Wheelchair California competi...

5 Sep 202349min

#130: Andrew Cherico, College Student With SMA

#130: Andrew Cherico, College Student With SMA

In episode 130, host Kevin Schaefer talks with Andrew Cherico from Orlando, Florida. Andrew is a sophomore at the University of Central Florida and is studying sports journalism. He talks about growin...

1 Aug 202339min

#129: Rylie Erbacher, Rare Artist With SMA

#129: Rylie Erbacher, Rare Artist With SMA

In episode 129, host Kevin Schaefer talks with Rylie Erbacher and her mom, Stephanie, from Iowa. Rylie has SMA, and she was recently recognized as one of 10 artists from around the country honored in ...

5 Jul 202328min

#128: Jenna Coburn, Social Media Manager, LGBTQIA+ and Disability Advocate

#128: Jenna Coburn, Social Media Manager, LGBTQIA+ and Disability Advocate

In episode 128, host Kevin Schaefer talks with Jenna Coburn from Palm Springs, California. Jenna is a social media and marketing manager for Access Medical, and she has SMA. She talks about her family...

7 Jun 202341min

#127: Kevan Chandler, author, traveler, and nonprofit founder

#127: Kevan Chandler, author, traveler, and nonprofit founder

In episode 127, host Kevin Schaefer talks with Kevan Chandler, founder of the nonprofit organization We Carry Kevan. In 2016, Kevan used an adaptive backpack so that his friends could carry him on a t...

2 Mai 202351min

#126: Janelle Fiesta and Antoine Vuong, interabled couple

#126: Janelle Fiesta and Antoine Vuong, interabled couple

In episode 126, host Kevin Schaefer talks with Janelle Fiesta and Antoine Vuong from Honolulu, Hawaii. They are an interabled couple who met when they were both in high school. Janelle shares her expe...

4 Apr 202339min

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