Logan’s Legacy: Fire Fighter Family Shares Story to Inspire Hope
Meet Chris Harman, a fire fighter and member of Phoenix, AZ Local 493, and his wife Shelle, who open up about their son Logan, who passed away from SMA type 1 in 2009.
Tag: Spinal Muscular Atrophy (SMA
A Mother’s Love and a Helping Hand from Numotion Give Boy with SMA Independence
Jack, who lives with SMA Type 1, is continuing to gain independence, part in thanks to Numotion.
How Having a Disability Helped Me Accept My Sexuality
Hugo Trevino shares insightful observations about the intersectionality of having a disability and accepting your sexual or gender identity — and how having SMA helped him come out and live proudly as a gay man.
Try not to be inspired by this round-up of Team Momentum stories
Take a look at some of the most heartwarming MDA Team Momentum stories guaranteed to give you all of the feels.
Siblings Run 10K Together with Help from Team Momentum
Siblings Hugo and Maria Trevino participated in the Chicago Spring Half Marathon and 10K with MDA Team Momentum.
Spinraza Helps Young Woman Participate in Muscle Walk — and She Thinks You Should, Too
Kate, who lives with SMA type 3 and has directly benefited from, Spinraza, a medication that can trace its root back to MDA, encourages supporters to go the distance for MDA via their local MDA Muscle Walks.
Advocating for the Whole Community Starts with Self-Advocacy: Reflections from the MDA Advocacy Conference
Spending time in our nation’s capital with dozens of other MDA families gave me a new sense of empowerment and taught me to apply a skill I’ve already honed in my personal life to the public policy arena. It was inspiring and exciting to see so many people come together in one place to do our part in making this country a better place for people who live with muscle-debilitating diseases.
Promising results in phase 1 SMA gene therapy trial
Chicago-based biotechnology company AveXis has announced encouraging results from its completed phase 1 gene therapy trial to test the investigational therapy AVXS-101 in infants with type 1 SMA.
Trial Seeks Participants to Test CK-2127107 in SMA
Investigators are seeking participants for an ongoing phase 2 clinical trial, sponsored by Cytokinetics, to test the investigational drug CK-2127107 in people with types 2, 3 or 4 SMA.
Cooking with Caregivers: A Guide
As an adult living independently with spinal muscular atrophy (SMA), Joe Akmakjian had to learn to cook for himself with the help of others. “Cooking through the hands of someone else is a talent,” he says.
