#55 - Interview With Victor Guerra
In episode 55, host Kevin Schaefer interviews Victor Guerra from Fresno, California. Victor is an entrepreneur who has SMA Type 2, and he uses his online store to promote messages of positivity and motivation. During this discussion, he talks about growing up with SMA, building his business, and dealing with medical setbacks throughout his life. Victor’s website: www.victortheinspiration.com Victor’s Instagram: @victortheinspiration Are you interested in learning more about Spinal Muscular Atrophy? Please visit www.smanewstoday.com
7 Huhti 202052min
How Scoliosis Surgery in SMA Children is Linked to Permanent Motor Skill Loss
Amid the coronavirus crisis forums moderator DeAnn Runge has to decide if she wants to risk exposure to the virus to continue her Spinraza treatments. SMA News Today’s multimedia associate, Price Wooldridge, discusses how scoliosis surgery in SMA children is linked to permanent motor skill loss. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6 Huhti 20206min
Discussing Markers of Inflammation Essential for AAV Gene Therapy Use & Thoughts About “Crip Camp"
Forums Director Kevin Schaefer talks about the new Netflix documentary “Crip Camp,” which tells the story of a summer camp in the 50s and 60s for teens with disabilities. SMA News Today’s multimedia associate, Price Wooldridge, discusses markers of inflammation essential for AAV gene therapy use. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
3 Huhti 20206min
The SMA News Today Forums: a Place to Share Ideas That Will Brighten Spirits During Difficult Times
With a community full of problem solvers the forums have become a place to share ideas that will brighten spirits during these difficult times. Also, forums Director Kevin Schaefer reflects on past times of self-isolation, and how the one he’s experiencing now compares. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
1 Huhti 20205min
Global Rare Disease Group’s Goal to Have 1,000 New Therapies by 2027 & Benefits of a Service Dog
Forums moderator DeAnn Runge talks about how having a service dog has enhanced her life. SMA News Today’s multimedia associate, Price Wooldridge, discusses a global rare disease group’s goal to have 1,000 new therapies by 2027, despite the current COVID-19 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
30 Maalis 20208min
Book, Movie and Spotify Recommendations & Study Recommends a Lower Radiation Dose for Spinraza Scans
Forums Director Kevin Schaefer shares some book, movie, and Spotify recommendations for people who are on quarantine. SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which recommends a lower radiation dose for Spinraza scans. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
27 Maalis 20208min
Alternative Solutions to Physical Therapy During the COVID-19 Pandemic
Forums Director Kevin Schaefer talks about alternative solutions to physical therapy. As a result of the COVID-19 pandemic, he has to refrain from going to his appointments for now. Also, believe it or not, despite being high on the list, the coronavirus isn’t the only topic of conversation on the forums. DeAnn is in need of a recommendation for a cell phone and Alyssa is wondering what made you smile today. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
25 Maalis 20204min
New Test Screens 420 Genes for Markers of SMA & A Message to Friends, Family About COVID-19
Forums moderator DeAnn Runge shares her message to friends and family in regards to COVID-19 and their lives being turned upside down. SMA News Today’s multimedia associate, Price Wooldridge, discusses a new test which screens 420 genes for markers of Spinal Muscular Atrophy and other diseases. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
23 Maalis 20205min
