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Blog Post | Personal Stories

My Gene Therapy Journey: The Graves Family

Kody Graves and Sydney Knobel-Graves When Sydney Knobel-Graves and Kody Graves became first-time parents in July of 2019, they quickly realized that the timing of their daughter Kenzie’s birth would…

Tags: Gene Therapy, Healthcare, MDA Care Centers, My Gene Therapy Journey, Newborn Screening, Parenting


Blog Post | Inclusion, Independence, Lifestyle, Personal Stories

MDA Ambassador Guest Blog: How Technology Changed My Life – and Future

Luke Hennessy lives in Prior Lake, Minnesota, and has SMA Type 2. He is studying Pre-Law with a major in Computer Information Systems and a minor in Political Science at…

Tags: Ambassador Guest Blog, Ambassadors, College, Community, Employment, Relationships, Young Adults


Blog Post | Get Involved, Health, News, Science + Research

2025 MDA Clinical & Scientific Conference Registration is Open

What? When? Where? Exciting news! The 2025 MDA Clinical & Scientific Conference prospectus is now available, and registration is open! Join us from March 16-19, 2025, at the Hilton Anatole…

Tags: MDA Clinical and Scientific Conference


Blog Post | Personal Stories, Science + Research

A Revolutionary Decade for Spinal Muscular Atrophy Therapies

Over the last eight years, there has been an unprecedented transformation in the spinal muscular atrophy (SMA) treatment space, with the approval of multiple new treatment options that have changed…

Tags: Antisense Oligonucleotide, Clinical Trials, Drug Development, Featured Content, Gene Therapy, Innovation, Newborn Screening, Research


Blog Post | Health, Science + Research

Simply Stated: Updates in Exon Skipping Technology

Over the last decade, there has been a boom in the development of exon skipping therapies to treat people living with the rare neuromuscular disease Duchenne muscular dystrophy (DMD). Treatment…

Tags: Simply Stated


Blog Post | Health, Independence

Preparing for College Life with a Disability

Your healthcare team can help your student prepare for a healthy college experience with a disability.

Tags: College, Education, Featured Content, Parenting, Young Adults


Blog Post | Health, Personal Stories

Coping with Grief After Losing a Loved One to a Neuromuscular Disease

Losing a loved one can be overwhelming. That’s why it’s important to know how to manage the emotions of grief.

Tags: Caregiving, Featured Content, Mental Health


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

MDA Guest Ambassador Blog: Cycling Towards a Cure, One Mile at a Time (Charcot-Marie-Tooth disease)

Lilly F. is a 15-year-old rising junior from New York.  Lilly was diagnosed with CMT1a when she was 4 years old.  With no approved treatments for CMT, Lilly follows a…

Tags: Ambassador Guest Blog, Ambassadors, Community, Young Adults


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

MDA Ambassador Guest Blog: How Assistive Technology Makes Learning More Independent

August Johnson, more commonly known as A.J., was diagnosed with spinal muscular atrophy (SMA) when he was nine months old. He recently graduated from high school and will be attending…

Tags: Ambassador Guest Blog, Ambassadors, Education, Young Adults


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

MDA National Ambassador Blog-Letters From Leah: Learn to Accept Your Reality

Summer has finally arrived! Schools are out, parks and beaches are in. The majority of us wear a more summer-appropriate style, while others feel the need to cover what makes…

Tags: Ambassadors, Leah, Letters From Leah