Join us for our First Annual Taking Steps Toward Treatment Virtual Walk on Saturday, May 31, 2025. Gather together in person or virtually with your family and friends to raise awareness and research funding for DYNC1H1-Related Disorders.
Even though we won’t be walking, running or rolling on the same course, we will all be moving for the same cause: to raise money to fund research on DYNC1H1-Related Disorders with a constant drive towards low-risk, high reward treatments.
WHO: Anyone can join! Register to create your own team, join an existing team, or participate as an individual - all are welcome! You can invite others to join your team and share your story and pictures on social media, or simply register yourself or your team. Every dollar raised will fund research and ultimately get us closer to improving the lives of people with DYNC1H1-Related Disorders.
WHAT: You will walk or roll to raise awareness and research funding for DYNC1H1-Related Disorders. The DYNC1H1 gene is on the 14th chromosome so we are encouraging participants to walk for 14 minutes, 14 blocks, or 1.4 miles.
You might also consider purchasing our Taking Steps Toward Treatment Fundraising shirt separately through our merchandise store: https://www.bonfire.com/taking-steps-toward-treatment/
Note: All proceeds from fundraising and shirt sales will go directly to the DYNC1H1 Association. You must purchase a shirt separately before May 8 in order to be guaranteed delivery before the event.
WHEN: Join us virtually on May 31, 2025 at any time with your family, your team or on your own for the First Annual Taking Steps Toward Treatment Walk to support the DYNC1H1 Association! If you’re unable to walk on Saturday, May 31, we encourage you to walk anytime the week of and post photos!
WHERE: Any location that is convenient for you!
WHY: The DYNC1H1 gene codes for the protein, dynein, which is essential for many bodily functions. Individuals with mutations in the DYNC1H1 gene may experience a range of symptoms, including global developmental delays, intellectual disabilities, seizures, speech difficulties, feeding issues, sleep problems, autism, visual impairments, low muscle tone, limited mobility, or bone defects.Currently there are no treatment options for DYNC1H1-Related Disorders and we’re hoping for a future with treatment options for all. That’s why we walk.
The DYNC1H1 Association is a non-profit organization dedicated to supporting research to improve the knowledge and understanding of DYNC1H1-Related Disorders so that viable therapeutic options can be developed in order to improve the quality of life of those with DYNC1H1-Related Disorders. The Taking Steps Toward Treatment Virtual Walk supports the mission of the DYNC1H1 Association as we raise public awareness and funds for life-changing research.
HOW: Register yourself or your team for our first annual Taking Steps Toward Treatment Virtual Walk. On the day of the walk post photos and/or videos of your and be sure to tag the DYNC1H1 Association, and use the hashtags #stepstowardtreatment and #dync1h1walk.
Thank you for your participation and support!