SMA Caused by Mutation in ASAH1 Gene Reported in Romania

SMA Caused by Mutation in ASAH1 Gene Reported in Romania

SMA News Today’s multimedia associate, Price Wooldridge, discusses a first-ever case in Romania of Spinal Muscular Atrophy (SMA) caused by a mutation in the ASAH1 gene. Plus, DeAnn Runge talks about a topic that’s keeping her up at night. She’s concerned she could lose 75% of her caregivers. She also shares about her next vlog regarding her views on SMA treatment effectiveness. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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#140: Lucy Trevino, Academic and Advocate

#140: Lucy Trevino, Academic and Advocate

Note: This podcast includes thoughts about suicide. If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7)...

6 Kesä 202439min

#139: Dianna Warren, Ms. Wheelchair USA Ambassador

#139: Dianna Warren, Ms. Wheelchair USA Ambassador

In episode 139, host Kevin Schaefer talks with Dianna Warren from Canton, Ohio. Dianna is an ambassador for Ms. Wheelchair USA, and for 32 years she ran a disability bowling league. She discusses thes...

7 Touko 202438min

#138: Nolan and Blake Shofner, Brother Entrepreneurs

#138: Nolan and Blake Shofner, Brother Entrepreneurs

In episode 138, host Kevin Schaefer talks with Nolan, who lives with SMA, and Blake Shofner from Princeton, Illinois. The brothers discuss their dynamic as siblings and business partners, as they ar...

9 Huhti 202438min

#137: Jared Wayland: Graphic Designer and Music Connoisseur

#137: Jared Wayland: Graphic Designer and Music Connoisseur

In episode 137, host Kevin Schaefer talks with Jared Wayland from Ontario. Jared discusses growing up with SMA type 3 and becoming a husband and father. He also talks about his passion for music and g...

5 Maalis 202447min

#136: Shaniqua Granby Discusses Identity and Community

#136: Shaniqua Granby Discusses Identity and Community

In episode 136, host Kevin Schaefer talks with returning guest Shaniqua Granby as she shares life updates and discusses how she navigates struggles and embraces community. ===========================...

6 Helmi 202437min

#135: Ryan Kinnear, Fisherman and Hunter With SMA

#135: Ryan Kinnear, Fisherman and Hunter With SMA

In episode 135, host Kevin Schaefer talks with Ryan Kinnear from Glendale, Arizona. An avid fisherman and outdoor enthusiast, he uses assistive technology to pursue his passions. Ryan talks about usin...

9 Tammi 202435min

#134: Dr. Edward Smith, Neurologist and SMA Specialist

#134: Dr. Edward Smith, Neurologist and SMA Specialist

In episode 134, host Kevin Schaefer talks with Dr. Edward Smith from Hillsborough, North Carolina. Dr. Smith spent the majority of his career as a clinical neurologist, and Kevin was one of his longti...

5 Joulu 202359min

#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 Marras 202332min

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