Columnist Connie Chandler writes about her family's tradition of baking and decorating holiday cookies, a project that SMA ...

Fatigue in the diaphragm may contribute to breathing issues in people with spinal muscular atrophy, a new study reports.

The FDA's approval of SMA treatment Itvisma marks an "important moment" for the SMA community, a Novartis executive says.

The specialty pharmacy Orsini was selected as a partner to provide Itvisma, the newly approved gene therapy for people with ...

Columnist Sherry Toh prefers holiday giving rather than receiving and making others happy, because what she wants isn't found in stores.

Columnist Connie Chandler gives thanks for the acts of kindness her caregivers perform — the sweet stuff that makes life so ...

Last week, I wrote about my wheelchair and how, even though I get frustrated or embarrassed by it sometimes, I’m thankful that it gives me comfort, support, mobility, independence, and opportunities ...

In her anthology “Disability Visibility: First-Person Stories from the Twenty-first Century,” the late activist and writer Alice Wong offers profound insight into the power of storytelling. She says ...

A high-dose regimen of nusinersen (Spinraza) has been recommended for approval by the CHMP, marking a potential new option ...

Our journey was rough from the start. During a well child visit, I shared concerns that something was going on with my son, Luke (call it mom instincts). We were referred to a neurologist and then a ...

New treatments for spinal muscular atrophy (SMA) are helping many people live longer, fuller lives, changing what it means to grow up — and grow older — with the condition. SMA is now being managed ...