European Spinraza Label Updated to Reflect Long-Term Benefits & Trending Topics

European Spinraza Label Updated to Reflect Long-Term Benefits & Trending Topics

We discuss how the European Spinraza label was updated to reflect long-term benefits in broad ranges of SMA patients and Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.

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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 Touko 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 Huhti 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 Helmi 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 Tammi 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 Joulu 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 Loka 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 Syys 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 Elo 202450min

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