Amplifying Community Voices on World Duchenne Awareness Day

September 7 is World Duchenne Awareness Day. At Cure Rare Disease, we're all too aware of Duchenne muscular dystrophy. It’s the reason we’re working tirelessly to change the way therapeutics are delivered.

Our patients and families drive the mission behind Cure Rare Disease, and many have been brave enough to share their own stories of living with rare disease. Today, we’re amplifying their voices with a round-up of a few of our most powerful blog post submissions.

  1. 30 With DMD: Finding My Life’s Purpose

An active member of the accessible gaming community, Vivek Gohil has found a meaningful way to help others through his work with accessibility and inclusivity.

  1. Double Whammy

Beau Bryan, father of Sawyer and Wesley Bryan, shares a father’s perspective on processing the emotional impact of a double Duchenne diagnosis.

  1. Mount Duchenne: Hiking A Mountain We Never Wanted to Climb

CRD Community Engagement Director and Duchenne mom, Sarah Krieger, talks about putting one foot in front of the other and gathering resources along the way.

  1. Finding the Perfect Home for All Our Family’s Needs

The Hamilton family recently made a cross-country move to help provide their son, Kal, with a higher quality of care and an accessible home.

  1. The Precious Gift of a Rare Disease Diagnosis

Duchenne muscular dystrophy is a thief—of time, health, and so much more. During the pandemic, Kati Falger chose to find joy in the gift of togetherness with her son, William.