#103: Clinical Trials and Advocacy with Stephen Mikita and Arya Singh

#103: Clinical Trials and Advocacy with Stephen Mikita and Arya Singh

In episode 103, host Kevin Schaefer talks with Stephen Mikita and Arya Singh, two individuals with SMA who have years of experience with clinical trials. Stephen, 66, was an Assistant Attorney General for the state of Utah for more than 30 years, representing the three largest state agencies providing services and protections for individuals with disabilities. As one of the oldest survivors of SMA, Mr. Mikita has been uniquely positioned to advocate for the patient perspective at every stage of drug development. Arya is a senior at Yale and has dedicated much of her childhood to clinical research. Her parents are the founders of The SMA Foundation, which has brought some of the world’s greatest scientists into SMA research. Arya herself has been a part of clinical research, and this experience was the inspiration behind a children’s book, Courageous Calla & The Clinical Trial. She is a member of the New Haven Commission on Disabilities, with plans to obtain her undergrad degree this spring and a master’s on public health next year. ================================ The SMA Foundation: https://smafoundation.org/ Arya’s book: https://www.amazon.com/Courageous-Calla-Clinical-Trial-Singh/dp/B0892B4D8G ================================ 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 www.smanewstoday.com

Jaksot(444)

#141: Quinn Bucher, Theater Student With SMA

#141: Quinn Bucher, Theater Student With SMA

In episode 141, host Kevin Schaefer talks with Quinn Bucher (he/they) from Athens, Ohio. A student at Earlham College studying theater, he talks about growing up in an arts-oriented household, making ...

25 Kesä 202450min

#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

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