Problems With Metabolising Fat Molecules Are Worrisome In SMA Children & Being Inspirational
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that states that problems with metabolising fat molecules are evident and worrisome in SMA children and Forums Director Kevin Schaefer talks about when people call him “inspirational.”
9 Loka 20199min
#43 - Interview With Jeff Olander
In episode 43, host Kevin Schaefer interviews Jeff Olander from Raleigh, North Carolina. Jeff is a PhD student at UNC-Chapel Hill, studying physics. He talks in this interview about his education, career goals, and his life with SMA Type 2.
1 Loka 201949min
Macedonian Gaucher Activist For Rare Disease Patients & Getting Ready For The Cold
We discuss a Macedonian Gaucher activist, whose publicizing the plight of rare disease patients. Although fall and winter are her least favorite seasons, DeAnn finds being prepared can help the transition. She shares what she does to welcome, or at least tolerate the change of seasons. 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
30 Syys 20198min
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.
27 Syys 20197min
High Chance Of Scoliosis Surgery in Types 1C and 2 & Superheroes With Disabilities
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a Dutch study that states there is a high probability of scoliosis surgery found for SMA types 1C, and 2. Community Development Manager Kevin Schaefer talks about a new memoir by disability rights activist Keah Brown.
25 Syys 20198min
Spinraza Gives Babies With Type 1 SMA Hope For a Healthy Life in North Macedonia
We discuss how Spinraza gives babies with type 1 SMA in North Macedonia hope for a healthy life. Also, SMA News Today’s forums moderator, DeAnn Runge, shares how service dogs were introduced into her life, and how service dog fraud jeopardizes their role. 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.
23 Syys 20196min
Phase 2 Trial Shows Presymptomatic Spinraza Treatment to SMA Children Reaching Milestones
Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. We discuss how a phase 2 trial shows presymptomatic Spinraza treatment leads to SMA children reaching otherwise unachievable milestones. 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.
20 Syys 20196min
The World’s First Alport Stamp is a Macedonian Mom’s Latest Win for Rare Disease Patients
Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how the world’s first Alport stamp is a Macedonian mom’s latest win for rare disease patients.
18 Syys 20199min
