European SMA Advocates Question The EU’s Willingness to Reimburse Zolgensma & Independence

European SMA Advocates Question The EU’s Willingness to Reimburse Zolgensma & Independence

We discuss how European SMA advocates question the EU’s willingness to reimburse for Zolgensma. Also, SMA News Today forums moderator DeAnn Runge shares her perspective about claiming your independence while living with SMA. 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

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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 Juni 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 Maj 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 Apr 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 Mars 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 Feb 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 Jan 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 Dec 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 Nov 202332min

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