#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

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#65 - Interview With Dwight Reed

#65 - Interview With Dwight Reed

In episode 65, host Kevin Schaefer talks with Dwight Reed from Virginia. Dwight is a father of three, and his youngest daughter has SMA Type 1. Dwight discusses his family life, engaging with the SMA community, treatments, and more. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.

1 Sep 202028min

#64 - Roundtable Podcast Discussion on Technology

#64 - Roundtable Podcast Discussion on Technology

In this episode, members of the SMA News Today team discuss assistive technologies that have had a unique impact on their lives. These technologies include electric wheelchairs, Amazon Echo devices, the JACO robotic arm, adaptive vehicles, and more. ================================= To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com

24 Aug 202045min

#62 - Interview With Shawn Stewart

#62 - Interview With Shawn Stewart

In episode 62, host Kevin Schaefer talks with Shawn Stewart from southern California. Shawn has his own tax service business, and he has SMA Type 3. He discusses growing up with a disability, adult life, and getting married in 2019. Listen here! To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.

21 Juli 202040min

#61 - Recapping the 2020 Cure SMA Virtual Conference

#61 - Recapping the 2020 Cure SMA Virtual Conference

In episode 61, the SMA News Today team shares some highlights from the 2020 virtual Cure SMA conference. They discuss webinar presentations, research updates, and virtual social events which they participated in. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com

7 Juli 202032min

The First Virtual Cure SMA Conference, Creating a Sanctuary, Scoliosis & Epic Wheelchair Stories

The First Virtual Cure SMA Conference, Creating a Sanctuary, Scoliosis & Epic Wheelchair Stories

Forums Director Kevin Schaefer talks about taking part in the first virtual Cure SMA conference. This week’s forum topics include DeAnn’s latest vlog regarding creating a sanctuary, scoliosis as an adult as well as epic wheelchair stories. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

17 Juni 20206min

#60 - Interview With George Corbin

#60 - Interview With George Corbin

In episode 60, host Kevin Schaefer interviews George Corbin from Neptune, New Jersey. George is a graduate of Temple University, and he has SMA type 3. He currently works as a mortgage loan officer. During this discussion, George talks about growing up with SMA, his mindset of perseverance, and his real estate career. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.

16 Juni 202036min

How Heart Problems in SMA May Be Tied To Calcium Dysregulation

How Heart Problems in SMA May Be Tied To Calcium Dysregulation

SMA News Today’s multimedia associate, Price Wooldridge, discusses how heart problems in SMA may be tied to calcium dysregulation. Forums moderator DeAnn Runge shares her thoughts on why reflecting on life a year ago should evoke happiness and joy rather than sadness. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

15 Juni 20207min

SHINE Study Data Finds Spinraza Shows Sustained Efficacy Over Years of Use

SHINE Study Data Finds Spinraza Shows Sustained Efficacy Over Years of Use

SMA News Today’s multimedia associate, Price Wooldridge, discusses the SHINE study data showing Spinraza has sustained efficacy. In Brianna Albers’ latest column, she calls for more black representation in the disability community. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

12 Juni 202012min

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