Archives




Blog Post | Independence, Lifestyle, Personal Stories

Quest Podcast: New Year, New Mindset with Jose Flores

We are excited to start a new year talking about new mindsets, especially when it comes to adversity. On our first episode of 2023, Mindy talks mindset with Jose Flores,…

Tags: Quest Podcast


Blog Post | News, Science + Research

MDA 2023 Clinical and Scientific Conference – Q&A

The MDA 2023 Clinical and Scientific Conference is just around the corner and we hope you are planning to join us! The conference will highlight unprecedented research advancements and clinical…

Tags: MDA Clinical and Scientific Conference, Research


Blog Post | Lifestyle, Personal Stories

MDA Ambassador Guest Blog: A Story About Finding My One True LOVE….

Jamie and Amy at Amy’s high school graduation. My husband, Jamie, and I met when I was a freshman in high school and he a sophomore, after being introduced by…

Tags: Ambassador Guest Blog, Ambassadors, Relationships


Blog Post | Inclusion, Independence, Personal Stories

International Day of Women and Girls in Science: MDA’s Spotlight on Katie Frayer

Katie Frayer, Engineering Analyst at Whirlpool Corporation International Day of Women and Girls in Science, February 11, endeavors to acknowledge and celebrate the invaluable role that women and girls play…

Tags: Community, Education, Employment


Blog Post | Health, Science + Research

How the New LGMD Diagnostic Codes Could Benefit the LGMD Community

On October 1st, new diagnostic codes for the limb-girdle muscular dystrophies (LGMDs) became officially available for use by clinicians and researchers marking the first time the LGMDs had diagnostic codes…

Tags: Advocacy Updates, Healthcare


Blog Post | Health, Lifestyle

Nutrition on a Budget

Expert tips for healthy eating on a budget in a time of rising food costs and deepening food shortages.

Tags: Featured Content, Nutrition


Blog Post | Research

Clinical Trial Alert: Phase 2 Study of EDG-5506 in Adults or Adolescents with BMD

Researchers at Edgewise Therapeutics are seeking adults and adolescents living with Becker muscular dystrophy (BMD) to participate in a Phase 2 clinical trial (CANYON) to evaluate the safety and efficacy of…

Tags: Clinical Trial Alert


Blog Post | Advocacy, Finding a Diagnosis, Inclusion

Access to Neuromuscular Disease Care for Black People and People of Color

A look at equity in treatment and access to care for Blacks and other people of color in the neuromuscular disease community.

Tags: Community, Featured Content, Healthcare, MDA Clinical and Scientific Conference, Research


Blog Post | Lifestyle, Personal Stories

Inclusion, Expression, and Advocacy in the Art World

The last few years have presented small steps in the right direction for a long overdue societal shift in mindset when it comes to inclusion for those living with disabilities.…

Tags: Community, Employment


Blog Post | Finding a Diagnosis, Health, Research

Simply Stated: Updates in Oculopharyngeal Muscular Dystrophy (OPMD)

Oculopharyngeal muscular dystrophy (OPMD) is a rare, slowly progressive muscle disease that is characterized by weakness of the eyelids (ocular) and throat (pharyngeal) muscles. In some cases, OPMD also causes…

Tags: Clinical Trial, Gene Therapy, Grants, Research, Research Advances, Simply Stated