‘Call Me’: What the Labor Day MDA telethon taught me about advocacy
What comes to mind when you think of Labor Day? For some people, it might mean a cookout, a day trip to the lake, or a last, desperate dip in the swimming pool. For me,…
Community Perspectives
Spinraza helps restore key amino acid imbalance in severe SMA
Spinraza (nusinersen) helps correct a key amino acid deficiency in people with a severe form of spinal muscular atrophy (SMA), a study has found. Researchers found that the treatment restores levels of L-arginine, an amino…
A celebration of breakthroughs, mine and my parents’
My parents came to visit me last weekend. For the past three years, I’ve been living on my own, 600 miles away from them. I love my home and my community, and I know that for now, I’m where…
A celebration of breakthroughs, mine and my parents’
My parents came to visit me last weekend. For the past three years, I’ve been living on my own, 600 miles away from them. I love my home and my community, and I know that for now, I’m where…
One useful thing SMA taught me was how to accept change
Now that a new school year is ramping up, my mom’s volunteer day care service for my niece, Lily, and nephew, Lucas, is back in full swing. My sister, an elementary school teacher, had all-day meetings…
One useful thing SMA taught me was how to accept change
Now that a new school year is ramping up, my mom’s volunteer day care service for my niece, Lily, and nephew, Lucas, is back in full swing. My sister, an elementary school teacher, had all-day meetings…
Putting yourself — your whole self — out there is a challenge
I prefer to write columns after everything is said and done. It’s why I didn’t tell you all about my dad’s cancer until I knew he was going to be OK. I write stories for…
Nerve proteins may serve as biomarkers for SBMA progression
Adults with spinal and bulbar muscular atrophy (SBMA) have elevated levels of neurofilament light (NfL) chain and glial fibrillary acidic protein (GFAP), two biomarkers for nerve damage, in the cerebrospinal fluid (CSF) that surrounds the brain and…
On either longer travels or day trips, I aim to have fun
I’ve written plenty about how hard I work to keep healthy and prevent emergencies. I work just as hard to figure out new ways to have fun, immersive experiences that can accommodate my physical…