I’m coming up with new ways to manage my pain without complaining
When you live many years with a disability like spinal muscular atrophy (SMA), as I have, you get used to pain and discomfort being a part of your life. My pain isn’t as…
Community Perspectives
Finding inspiration in the new year to make a positive impact
Last year sprinted to the finish line at breakneck speed. I couldn’t have stuffed much more into December’s calendar. Wrapping presents, finishing intense seasonal activities and mandatory year-end tasks, fulfilling copious obligations, and escaping to Charleston,…
High-dose Spinraza regimen approved in Europe for spinal muscular atrophy
The European Commission has approved a new high-dose regimen of Spinraza (nusinersen) for people with 5q spinal muscular atrophy (SMA). “We are proud to introduce the high dose regimen of SPINRAZA, which we have developed…
A spreadsheet reset helps me manage my caregiving team for the new year
I recently returned home from a seven-week holiday at my parents’ house. It’s become my annual tradition, and for a lot of reasons. It gives me a good chunk of quality time with my…
Ringing in the new year with public health insurance woes
I knew things would change when my mom retired. For one thing, there was going to be a whole third person hanging around our house; for most of my life, it was just my dad and…
Adding torso exercises to breathing exercises shows gains in SMA
A program that aims to simultaneously strengthen muscles needed for breathing and postural muscles in the trunk may benefit people with spinal muscular atrophy (SMA) more than a program that focuses only on breathing muscles, a…
Scientists find molecule that may protect nerve cells in SMA
A small molecule known as 10H-phenothiazine (PTZ) reduced the loss of motor neurons, the nerve cells lost in spinal muscular atrophy (SMA), in animal models of the disease. The treatment also rescued SMA-related changes in the…
Looking forward to the new year with more confidence than ever
I had no idea that I didn’t have a “normal” amount of makeup. Despite owning two full bags of products, excluding my brushes, it never occurred to me that I possessed more than the average person.
Motor unit changes track with SMA severity, new study shows
Changes in the motor unit, which is made up of a nerve cell and the muscle fibers it controls, may help doctors better understand how severe spinal muscular atrophy (SMA) is in each person, according to…
SMA community honors legacy of disability rights activist Alice Wong
Alice Wong, a disability rights activist with spinal muscular atrophy (SMA), devoted herself to fighting for the rights of people with disabilities and other underrepresented communities. When she died at age 51 in November, she left…
Recent Posts
- FDA approves high-dose Spinraza regimen for new, existing SMA patients
- Don’t underestimate the power of disability representation
- New study explores links between BMI and motor function in children with SMA
- What Eric Dane’s passing reminded me about living with SMA
- Reflecting on our SMA assignment and lessons from Dr. Seuss