VRK1 Mutations Were Found in Two Adult-Onset SMA Hispanics & the SSI Restoration Act of 2021

VRK1 Mutations Were Found in Two Adult-Onset SMA Hispanics & the SSI Restoration Act of 2021

SMA News Today’s multimedia associate, Price Wooldridge, discusses how VRK1 mutations were found in two adult-onset Spinal Muscular Atrophy (SMA) Hispanics. In the forums there are a lot of great discussions going on. A topic creating a lot of buzz is the SSI Restoration Act of 2021. July being Disability Pride month is another topic with a lot of interest. Other topics include disability portrayed in media, what the line is between inspirational and inspiration porn and Spinraza injection day woes. There are also members in various stages of pursuing a Jaco robotic arm. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/ Visit the SMA forums https://smanewstoday.com/forums/

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#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 Maj 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 Dec 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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