#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)

#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

#132: Collin Pollock, Business Owner With SMA

#132: Collin Pollock, Business Owner With SMA

In episode 132, host Kevin Schaefer talks with Collin Pollock from Garden Grove, California. Collin and his wife, Kyla, run a barbeque sauce business called WheelyQ. He discusses becoming a business o...

4 Loka 202329min

#131: Candis Welch, Disability Advocate and Ms. Wheelchair California

#131: Candis Welch, Disability Advocate and Ms. Wheelchair California

In episode 131, host Kevin Schaefer talks with Candis Welch from Los Angeles, California. A disability advocate, DEI practitioner, and consultant, Candis won the 2023 Ms. Wheelchair California competi...

5 Syys 202349min

#130: Andrew Cherico, College Student With SMA

#130: Andrew Cherico, College Student With SMA

In episode 130, host Kevin Schaefer talks with Andrew Cherico from Orlando, Florida. Andrew is a sophomore at the University of Central Florida and is studying sports journalism. He talks about growin...

1 Elo 202339min

#129: Rylie Erbacher, Rare Artist With SMA

#129: Rylie Erbacher, Rare Artist With SMA

In episode 129, host Kevin Schaefer talks with Rylie Erbacher and her mom, Stephanie, from Iowa. Rylie has SMA, and she was recently recognized as one of 10 artists from around the country honored in ...

5 Heinä 202328min

#128: Jenna Coburn, Social Media Manager, LGBTQIA+ and Disability Advocate

#128: Jenna Coburn, Social Media Manager, LGBTQIA+ and Disability Advocate

In episode 128, host Kevin Schaefer talks with Jenna Coburn from Palm Springs, California. Jenna is a social media and marketing manager for Access Medical, and she has SMA. She talks about her family...

7 Kesä 202341min

#127: Kevan Chandler, author, traveler, and nonprofit founder

#127: Kevan Chandler, author, traveler, and nonprofit founder

In episode 127, host Kevin Schaefer talks with Kevan Chandler, founder of the nonprofit organization We Carry Kevan. In 2016, Kevan used an adaptive backpack so that his friends could carry him on a t...

2 Touko 202351min

#126: Janelle Fiesta and Antoine Vuong, interabled couple

#126: Janelle Fiesta and Antoine Vuong, interabled couple

In episode 126, host Kevin Schaefer talks with Janelle Fiesta and Antoine Vuong from Honolulu, Hawaii. They are an interabled couple who met when they were both in high school. Janelle shares her expe...

4 Huhti 202339min

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