Archives
What You Need to Know About Open Enrollment in 2020
Open enrollment — the period each year when people are eligible to purchase new insurance or make changes to their existing insurance plans — is upon us. Buying health insurance…
Tags: Healthcare, Insurance, Resources
Once a Wild Idea, Successful First-Generation Exon-Skipping Therapies Pave the Way for Personalized Treatments
In 1996, MDA provided a small starter grant to Dr. Steve Wilton, a primary investigator at the University of Western Australia in Perth, for research into what scientists then thought…
Tags: Clinical Trials, Drug Approval, Drug Development, Exon Skipping, Innovation, Research, Research Advances
10 Tips for Finding Personal Care Attendants
Personal care attendants (PCAs) play a crucial role in helping people in the neuromuscular disease community day to day. Whether they’re assisting with activities of daily living or managing medical…
Queer Eye’s “Silver Lining” Sweeneys Stay in the Moment
The Sweeneys — John, 58; his wife, Jennifer, 50; and daughters Dana, 24; Rachel, 22; and Ashley, 19 — live in a rowhouse in a small suburb outside of Philadelphia.…
Tags: Caregiving, Relationships
Do you know your employment rights?
As we wrap up National Disability Employment Awareness Month, it is vital those living with a disability know their employment rights, learn what to do if they feel their employer…
Tags: Advocacy Updates, Employment, Resources
Scholar Rock Announces Positive Results from Interim Analysis of TOPAZ Phase 2 Study of SRK-015 to Treat SMA
On Oct. 27, Scholar Rock announced positive results from an interim analysis of its phase 2 clinical trial evaluating SRK-015, a therapy for treating spinal muscular atrophy (SMA). After six months…
Amylyx Announces More Results from Study of AMX0035 to Treat ALS
On Oct. 16, Amylyx announced an update from its CENTAUR trial evaluating the effects of the investigational drug AMX0035 (a combination of the small molecules sodium phenylbutyrate and taurursodiol) on…
MDA Announces New Collaboration Grants Program for Advocacy Organizations and Partners
We are excited to announce the launch of a new MDA program to foster partnerships and fund innovative work for the neuromuscular disease (NMD) community: MDA Collaboration Grants. An expansion…
Tags: Advocacy Updates, Grants
October is National Disability Employment Awareness Month: What Does That Mean?
Sarah Jean Schwegel, who has spinal muscular atrophy (SMA), works as the Public Policy and Advocacy specialist at Paraquad in St. Louis, Mo. In 2015, Sarah graduated from Maryville University…
Tags: Advocacy Updates, Employment, Resources
People May Not Accept Your Disability. You Don’t Have to Accept That.
Tomeca Goodwin, 46, lives with a form of limb-girdle muscular dystrophy (LGMD). Born in Cincinnati, where she still resides, Tomeca has had a long career in community health. She also…
Tags: Employment