#84: Scholar Rock Updates and Embracing the Growing Pains of New Wheels

#84: Scholar Rock Updates and Embracing the Growing Pains of New Wheels

In episode 84, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss some topics from the 2021 virtual Cure SMA conference and general news updates. The team also talks about restrictions being lifted across the U.S. and the impact of this on the SMA community. Finally, they highlight some recent columns from our main website. ================================ Links to news stories and forum topics: - Apitegromab Put on FDA’s Fast Track https://smanewstoday.com/news-posts/2021/05/26/muscle-directed-therapy-apitegromab-put-on-fda-fast-track/ - SMA Added to North Carolina’s Newborn Screening Program https://smanewstoday.com/news-posts/2021/06/09/sma-added-north-carolina-newborn-screening-program/ - Discussion on the film "Sound of Metal" https://smanewstoday.com/forums/forums/topic/have-you-watched-sound-of-metal/ ================================ Links to columns: - ”Embracing the Growing Pains of New Wheels” by Katie Napiwocki https://smanewstoday.com/columns/2021/06/03/new-power-wheelchair-embracing-growing-pains/ - ”I’m Taking My Time Returning to Normal” by Brianna Albers https://smanewstoday.com/columns/2021/06/07/taking-my-time-returning-normal/ - ”I Don’t Want a World Without SMA. Here’s Why.’” by Sherry Toh https://smanewstoday.com/columns/2021/06/09/gene-editing-world-without-sma/ ================================ 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 http://www.smanewstoday.com

Jaksot(444)

#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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