#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

Episoder(444)

#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

In episode 149, host Kevin Schaefer talks with Dr. Jessica Keogh from Philadelphia, Pennsylvania. An educator, disability advocate, and certified life coach, she discusses growing up with SMA, living ...

21 Mai 202541min

#148: Ashley Fox and Madeline Engel discuss friendship and caregiving

#148: Ashley Fox and Madeline Engel discuss friendship and caregiving

In episode 148, host Kevin Schaefer talks with Ashley Fox and Madeline Engel from California. Ashley has SMA, and Madeline became her best friend and caregiver when they were in college. They discuss ...

16 Apr 202544min

#147: Brandi Lewis, rare disease advocate and speaker

#147: Brandi Lewis, rare disease advocate and speaker

In episode 147, host Kevin Schaefer talks with Brandi Lewis from Birmingham, Alabama. A blood disorder awareness educator, TEDx speaker, writer, and nonprofit founder, Brandi is passionate about helpi...

27 Feb 202537min

#146: TJ Wall, graduate student with SMA

#146: TJ Wall, graduate student with SMA

In episode 146, host Kevin Schaefer talks with TJ Wall from Texarkana, Texas. TJ is working on his master’s in education at Texas A&M University, and he hopes to become a high school football coach. H...

14 Jan 202531min

#145: Carrie Manriquez, Mother of adult son with SMA

#145: Carrie Manriquez, Mother of adult son with SMA

In episode 145, host Kevin Schaefer talks with Carrie Manriquez from Sacramento, CA. Carrie is an elementary school principal, and her 24-year-old son Ryan has SMA type 2. She talks about her experien...

3 Des 202459min

#144: Doug McCullough, Advocate and Author With SMA

#144: Doug McCullough, Advocate and Author With SMA

In episode 144, host Kevin Schaefer talks with Doug McCullough from central New Jersey. The author of “A Billion People in the Shadows,” a new book about understanding disability, Doug previously work...

22 Okt 202453min

#143: Cory Lee, Travel Blogger and Influencer With SMA

#143: Cory Lee, Travel Blogger and Influencer With SMA

In episode 143, host Kevin Schaefer talks with Cory Lee from Lafayette, Georgia. A renowned expert on disabled traveling, he has visited all seven continents from his wheelchair. He runs the Curb Free...

10 Sep 202446min

#142: Savannah and Will Huff, Interabled Couple

#142: Savannah and Will Huff, Interabled Couple

In episode 142, host Kevin Schaefer talks with Savannah and Will Huff from Thomasville, Georgia. Savannah, who has SMA type 3, met Will in 2018. Listen in as they discuss their marriage, careers, and ...

6 Aug 202450min

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