Spinraza Stabilizes or Improves Motor Function in Older SMA Patients & The Reality of Aging
We discuss a US real-world study, that claims that Spinraza stabilizes or improves motor function in older SMA patients. Also, when you have a disease that’s considered the number one genetic killer of infants, getting old doesn’t cross your mind that often. DeAnn talks about the reality of aging parents and how it’s made her become self-reliant as she’s gotten older. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
20 Jan 20208min
Multidisciplinary Approach Improves Spinraza Dosing Process in SMA Patients & Parenting and SMA
We discuss a study that states how a multidisciplinary approach improves the Spinraza dosing process in SMA patients. Also, Forums Director Kevin Schaefer reads the latest piece by parent columnist Michael Casten. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
17 Jan 20209min
Importance of Media Representation for People With Disabilities & Conversations in the SMA Forums
Forums Director Kevin Schaefer talks about the importance of media representation for people with disabilities, and calls for more of it in 2020. Also, great conversations are going on in the forums. Alyssa is adjusting to her new wheelchair. DeAnn is dealing with a caregiver who is under the weather. Other topics include managing caregivers, when kids recognize disability and how humorous interactions can lighten the day. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
15 Jan 20206min
Targeted Genetic Screening Helps Diagnosing Patients With SMA-Like Symptoms & Pranking With SMA
We discuss how targeted genetic screening may be useful in diagnosing patients with SMA-like symptoms. Also, a harmless prank can be fun, but it’s not always easy when you have SMA. With the help of her niece DeAnn pulled a prank on her Mom. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
13 Jan 20207min
Early Trial Data Shows SRK-015 Increases Myostatin Growth Factor Levels in SMA Patients
We discuss early trial data that shows SRK-015 increases myostatin growth factor levels up to 100-fold in SMA patients & Forums Director Kevin Schaefer reads an excerpt from Alyssa Silva’s latest column. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
10 Jan 20207min
Early Trial Data Shows SRK-015 Increases Myostatin Growth Factor Levels in SMA Patients
We discuss early trial data that shows SRK-015 increases myostatin growth factor levels up to 100-fold in SMA patients & Forums Director Kevin Schaefer reads an excerpt from Alyssa Silva’s latest column. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
10 Jan 20207min
Volunteering As A Reward & Humorous Interactions With People
In her most recent column, I Don’t Need to Win to Be a Winner: Volunteering Is Its Own Reward, Halsey explains how her volunteer efforts have been recognized. Halsey not only works with a great group of people at Turnstone, they acknowledge and support the work she does. Also, Forums Director Kevin Schaefer talks about how having SMA has led to some humorous interactions with people. If you would like more information regarding SMA, please go to www.smanewstoday.com
8 Jan 20205min
#49 - Interview With Ashley Fox
In episode 49, host Kevin Schaefer interviews Ashley Fox from Southern California. Ashley is currently studying psychology at a community college, and she has SMA type 2. She talks about growing up with SMA, becoming a cheerleader in high school, and recently starting Spinraza. Visit our website: http://smanewstoday.com
7 Jan 202029min
