#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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#19 - Interview With Michael Morale

#19 - Interview With Michael Morale

SMA News Today Community Editor Kevin Schaefer and Forums Director Michael Morale interview one another in a new format that will feature more roundtable-style discussions about SMA. This podcast takes listeners through Kevin and Michael's unique life journeys with SMA and beyond, highlighting how living with the disease has not kept them from meeting their own life goals and dreams.

7 Marras 20181h 6min

#17 - Interview With Shane Burcaw

#17 - Interview With Shane Burcaw

In SMA News Today's 17th podcast, Community Editor Kevin Schaefer interviews Shane Burcaw, author and Founder and President of the nonprofit "Laughing At My Nightmare."

23 Loka 201836min

#18 SPECIAL EDITION - AveXis Announcement For FDA Approval Of AVXS101

#18 SPECIAL EDITION - AveXis Announcement For FDA Approval Of AVXS101

In this special edition of the SMA News today podcast, Forums Editor Michael Morale discusses AveXis' recent announcement that experimental SMA gene therapy AVXS-101 has been submitted to the US Food and Drug Administration (FDA) for approval.

22 Loka 20185min

#16 - Interview With Brian Ronningen

#16 - Interview With Brian Ronningen

In SMA News Today's 16th edition of Community Editor Kevin Schaefer's podcast, Kevin interviews Brian Ronningen -- a 48 year-old Human Resources professional who has SMA type 2 -- about his experience growing up with the disease in the 70s and 80s, as well as his perspectives on employment for those with disabilities.

11 Loka 201829min

#15 - Byron And Moriah Potter

#15 - Byron And Moriah Potter

In the 15th episode of the SMA News Today podcast, Community Editor Kevin Schaefer interviews Byron and Moriah Potter -- parents of two children who have SMA.

17 Syys 201839min

#14 - Interview With Amber Bosselman

#14 - Interview With Amber Bosselman

In SMA News Today's 14th podcast, Community Editor Kevin Schaefer interviews college student Amber Bosselman, who talks about her diagnosis as a child, life growing up with the disease, and her present and future goals.

22 Elo 201836min

#13 - Interview With Ann Heathcote

#13 - Interview With Ann Heathcote

SMA News Today Community Editor Kevin Schaefer interviews Ann Heathcote -- a college student with SMA type 2.

31 Heinä 201834min

#12 - Interview With Kristin Walters

#12 - Interview With Kristin Walters

24 year-old Kristin Walters talks to SMA News Today Community Editor Kevin Schaefer about overcoming depression, travel to Europe with SMA, and her experiences with Spinraza.

5 Heinä 201846min

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