What receiving care from a friend taught me about giving care
“If you need anything at all, don’t hesitate, just give me a yell!” Pam says on Saturday nights as she tucks me into bed. “OK, you, too!” I reply, and we giggle and bid each other…
Columns
Coordination lacking in transition from SMA pediatric to adult care
In a new interview-based study, adults with spinal muscular atrophy (SMA) reported a lack of care coordination during their transition from pediatric to adult care settings — along with poor communication, no clear transition plans, and…
Headache? Brain tumor? Unpacking the roots of illness anxiety
As a lifelong proponent of therapy, I go through phases. Sometimes I don’t need the support. Sometimes I do, so I go through the whole rigamarole of finding a practitioner I vibe with. It’s not a fun process.
Almost all kids given early Evrysdi walking 3 years later: Trial data
Nearly all children with spinal muscular atrophy (SMA) who were started early on Evrysdi (risdiplam) in a clinical trial — as newborns, before the onset of symptoms — are now walking after three…
The sustained intensity of indelible memories of SMA, and of Jeffrey
The fall of 1996 brought the usual glorious colors, cooler weather, and a whammy of a news bulletin: I was pregnant. In our 40s, my husband, Randy, and I adjusted as well as possible, as did…
SMA culture is changing, but love and joy are still the best treatment
A few years ago, a good friend of mine named Essie found out that her newborn daughter had been diagnosed with SMA. She reached out to me then, as she knew I had…
Preclinical study finds antidepressant may boost SMN
A preclinical study found that blocking the SMPD1 enzyme with available drugs such as the antidepressant clomipramine increases the levels of SMN, the protein missing in spinal muscular atrophy (SMA), potentially offering a new treatment strategy. “The strategy presented…
An invitation to the community to experience joy together
Have you ever solved the world’s problems? I have. Well, sort of. That’s what we say we’re doing when Mom and I get together for coffee with our friend Connie Chandler, a fellow SMA…
SMA Europe online tool helps patients find clinical trials
SMA Europe has launched an online tool designed to help patients, doctors, and others in the spinal muscular atrophy (SMA) community more easily explore ongoing clinical trials across Europe and worldwide. The organization said it aims…
Video game may boost physical activity in children with SMA
The “Tales from the Magic Keep” exergame — a video game that uses body movements to promote physical activity — proved to be a feasible and engaging home-based tool for children and adolescents with spinal muscular…
Recent Posts
- No one knows what they’re doing and everyone is doing their best
- Itvisma approval ushers in era of therapeutic choice for SMA patients
- There’s no place like home for the holidays
- Newborn screening for SMA boosts health, saves money: Study review
- Community is nonnegotiable for thriving with a rare disease