Archives
Hacking COVID: MDA Ambassador Edition, Part 2
In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more.…
Tags: Ambassadors, COVID-19, Mental Health
Five Questions With CMT Researcher Stephan Züchner
Stephan Züchner, MD, PhD, professor for Human Genetics and Neurology, Chair of the Human Genetics Department, and codirector of the John P. Hussman Institute for Human Genomics at the University…
Tags: Research, Research Advances
Sarepta Therapeutics Announces Positive Results from the SRP-9003 Gene Therapy Trial to Treat LGMD2E
On June 8, Sarepta Therapeutics announced positive results from its first study in human patients of SRP-9003, a gene therapy designed to treat limb-girdle muscular dystrophy (LGMD) type 2E. Data…
Tags: Clinical Trials, Research, Research Advances
Hacking COVID: MDA Ambassador Edition, Part 1
In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more.…
Tags: Ambassadors, COVID-19, Mental Health
Hacking COVID: Voices from the Community, Part 3
In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more.…
Tags: COVID-19, Mental Health
ReveraGen BioPharma Announces Completion of Vamorolone Study in 41 DMD Patients
On June 2, ReveraGen BioPharma announced the completion of two-and-a-half years of vamorolone treatment in 41 boys with Duchenne muscular dystrophy (DMD). The long-term data from this study indicated that…
Tags: Clinical Trials, Research, Research Advances
MDA Summer Camp’s New Adventure: Going Virtual
In March, as the novel coronavirus spread across the US, we at MDA realized it would be impossible to safely gather our community’s children and teens at MDA Summer Camps…
Tags: COVID-19, Summer Camp
A Letter from Case Worker Jana Unislawski to the MDA Community: How to Create an Emergency Care Plan for the COVID-19 Era
MDA Care Center providers across the country are working on the frontlines of the novel coronavirus pandemic. Every day, they’re fielding patient questions and finding new ways to practice medicine…
Tags: COVID-19, Caregiving, MDA Care Centers
Hacking COVID: Voices from the Community, Part 2
In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more.…
Tags: COVID-19, Mental Health, Relationships
NS Pharma Announces Positive Results from Phase 2 Study of Viltolarsen in DMD
On May 26, NS Pharma, a wholly owned subsidiary of the Japanese company Nippon Shinyaku Co. Ltd., announced positive results from its phase 2 clinical trial of the investigational therapy…