Archives




Blog Post | Finding a Diagnosis, Health, Science + Research

Simply Stated: Research Updates in Spinal-Bulbar Muscular Atrophy (SBMA)

Spinal-bulbar muscular atrophy (SBMA) is a genetic disorder in which degeneration of lower motor neurons, the nerve cells that connect the spinal cord and brainstem to the muscles, causes slow,…

Tags: Clinical Trials, Fundraising, Grants, Healthcare, Innovation, Research, Research Advances, Simply Stated


Blog Post | Science + Research

DMD Gene Therapy Approval Ignites Hope

The FDA’s approval of Elevidys, the first gene therapy for Duchenne muscular dystrophy (DMD) brings hopes and concerns for families in the MDA community.

Tags: Drug Approval, Exon Skipping, Featured Content, Gene Therapy, Research


Blog Post | Get Involved, Independence

Not JUST a Volunteer: The Powerful Impact of MDA Volunteers

While many volunteers undoubtedly recognize the multitude of valuable benefits gained by volunteering, they often minimize the incredible value that they bring. MDA’s Senior Director of Volunteer Programs, Wendi Dressen,…

Tags: Community, Fundraising, Research, Volunteers, Year of the Volunteer


Blog Post | Health

MDA’s Re-integration Back into Care Centers: Three Support Specialists’ Perspectives

As the world emerges from the clutches of the pandemic, a positive change is underway here at the MDA: our re-integration into Care Centers. Throughout the challenging times of the…

Tags: Community, Healthcare, MDA Care Centers


Blog Post | News

Air Travel Update: US House Passes FAA Reauthorization

On July 20, 2023, by a vote of 351-69, the US House passed legislation to reauthorize the Federal Aviation Act (FAA), which includes the most transformative air travel accessibility reforms…

Tags: Accessible Air Travel, Advocacy Updates, Community, Travel


Blog Post | Get Involved, Inclusion, Independence, Lifestyle, Personal Stories

MDA Ambassador Guest Blog: Navigating Disability Advocacy on My College Campus

MDA Ambassador Grace LoPiccolo MDA Ambassador Grace LoPiccolo, 20, of St. Louis, Missouri was diagnosed with CMT-1A at the age of nine. She currently attends Saint Louis University majoring in…

Tags: Ambassador Guest Blog, Ambassadors, College, College Experience, Community, Mental Health, Relationships, Resources, Young Adults


Blog Post | Independence, Lifestyle, Personal Stories

The Transition to Independent Living: A Parent’s Perspective

Through the many chapters and changing seasons of parenthood, preparing an adult child to venture out into the world on his or her own is perhaps one of the most…

Tags: Caregiving, College, Community, Parenting, Relationships, Transitions


Blog Post | Advocacy, Finding a Diagnosis, Get Involved, Health, Inclusion, Independence, Lifestyle, Personal Stories

Quest Podcast: ALS Podcast with Brooke Eby

In this Quest Podcast episode, we chat with Brooke Eby, who was diagnosed with ALS in March 2022. Brooke Eby was recently featured on the Today Show, and with almost…

Tags: Community, Healthcare, Mental Health, Relationships, Young Adults


Blog Post | Independence, Lifestyle

Stand Up and Go with Mobile Standers and Standing Wheelchairs

Mobile standers and standing wheelchairs are good for people who want the health benefits of standing without sacrificing mobility.

Tags: Equipment and Assistive Devices, Featured Content, Staying Active


Featured Article | Independence, Lifestyle

A Dozen Ways to Ask for Help

We all need help, but it can be hard to ask for it. These 12 ways to ask for help will lighten the load on your caregivers and yourself.

Tags: Caregiving, Community, Featured Content, Relationships