DRD Through the Lifespan: A Panel Discussion
On Sunday, Jan. 11th 2026, 3 caregivers of affected patients shared their stories. The affected patients range from their 50s to childhood. This blog post summarizes what was shared during the meeting.
Stay tuned for future, similar events!
Puzzles for Piper: A Community Coming Together for Rare Disease Research
Forty-four teams, nearly 200 people all coming together to raised over $23,000 for the DYNC1H1 Association, money that will go directly toward rare disease research and the development of potential treatments for DYNC1H1-related disorders.
John Davis’ Diagnostic Journey
Learn about the 2.5 year journey to getting a genetic diagnosis and how JD is doing now as he starts preschool!
Interview with a Genetic Counselor
Rozalia Valentine is a licensed genetic counselor and currently serves on the DYNC1H1 Scientific Advisory Board. She answered some common questions about genetic counseling for our community!
Sibling Story: Alec and Conor
Alec shared how growing up with his younger brother, Conor, has shaped his perspective on life and also his career aspirations.
Use your Cyber Monday Purchase to support the DA
Discover amazing deals this Cyber Monday on several useful items available on Amazon! This is your chance to not only save money but also support the DYNC1H1 Association in its quest for a cure. By shopping through our Amazon Affiliate links, you can make a difference without the need for a direct donation. Every purchase helps fund our research initiatives, allowing us to continue our vital work while you enjoy fantastic savings. Take advantage of these great offers today and support a worthy cause!
Inherited DYNC1H1: A Mother Shares Her Story of DYNC1H1 in Herself and Her Two Daughters
Jannine Scott shared about her own experience with DYNC1H1 and how it has affected her two daughters with inherited DYNC1H1.
Making the Difficult Decision to Step Back from my Career to be a Full-time Caregiver
I shared the post below on my LinkedIn after making the decision to step away from my career. Having a child diagnosed with DYNC1H1 and other related comorbidities has been difficult, and this decision was not made lightly. I hope that by sharing my story, I can help other families feel less alone.
Use your Amazon Purchases to support the DA!
Purchase through our Amazon Affiliate links and the DA will earn commission, supporting our research projects and race to treatments!