Updates
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Ella Has a Play Date with Her Friend with SMA
Play dates come and go for Ella, just as for any other 8-year-old. She usually has her friends come over to our house because ... Read more -
Survival Rate is Up for Adults and Children with Neuromuscular Disorders, Canadian Study Reveals
Adults and children with neuromuscular disorders — including those with spinal muscular atrophy (SMA) — are living longer, according to a 12-year population-based study in ... Read more -
Finding a Perfect Parking Spot: It’s Complicated
We’ve all had some cruddy parking experiences. But when you have a disability, it’s usually a little more complicated. The difficulties typically occur due ... Read more -
About that Episode of ‘Dr. Phil’
A few weeks ago, reality television host Dr. Phil sparked a major controversy with his statements about interabled relationships. Much like Ken Jennings’s infamous 2014 ... Read more -
The Power of a Platform
I’ve been meaning to update my website for years, so I sat down in January with the intent of revisiting my online presence. It ... Read more
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MDA Conference Bringing Neuromuscular Disease Experts to Orlando to Share ‘New Era’ in Treatment, Research
For more than four decades, comedian Jerry Lewis hosted the MDA Labor Day Telethon ... -
Recent Advancements in SMA Treatment, Screening Detailed in Review Study
Early intervention is crucial for the successful management of spinal muscular atrophy (SMA), according ... -
It’s Not Paranoia if Germs Are Out to Get You
If it’s all right with you, I’m going to use this week’s column to ... -
Valproic Acid Improves Gross Motor Function, but not Respiratory Function in SMA Patients, Review Finds
Valproic acid, or valproate, is a relatively safe drug that improves gross motor function ... -
My Bout with Pneumonia Brings Back Ugly Memories
My nearly three-year streak of good health came to a screeching halt at the ... -
PPMD, Cure SMA Join Prometheus in Data Collection Partnership
Cure SMA and Parent Project Muscular Dystrophy (PPMD) have formed a strategic partnership with Prometheus Research to ...
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Researchers Discover Promising New Gene Therapy Approach for Spinal Muscular Atrophy
News
A new genetic approach to restore the expression of the gene that causes spinal muscular atrophy (SMA) in patients’ cells holds promise to effectively and permanently treat the disease, researchers suggest. The study, “Seamless genetic conversion of SMN2 ... Read more