#103: Discussion on Clinical Trials and Advocacy

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 to write 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 of 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