Our Why
We joined the fight to end Duchenne Muscular Dystrophy in 2015 within months of Alex’s diagnosis. We first connected with other families and organizations focused on research, advocacy, and care. We felt very grateful to those before us who worked so hard to create an opportunity for patients like Alex to have access to a potential therapy in clinical trial.
For that reason and to help move the science forward even more, we began to fundraise and advocate for all those past, present, and future living with DMD.
How We Started
We initially partnered with another organization who gave us a platform to begin fundraising and advocating. Our first event we created and hosted was a golf outing in October 2016. The purpose was to raise funds for DMD research and generate awareness. Shortly after opening registration, we had enough player interest that we had to find a second golf course to host. Each year, our golf event attracts nearly 250 players, 50 volunteers, 60-70 silent auction donors, and a honorary chairperson and patient champion who come together to honor and support Duchenne patients. Since diagnosis we have raised over half a million dollars and counting.
There are so many aspects of Duchenne that need support and focus such as research, care, legislation, access, education, and assistance. It is difficult for one organization to focus on all of these things. In 2023, after 8 years of fundraising, networking, and advocating within the Duchenne community, we announced the launch of our own foundation.
Our Mission
The Alex Rezkalla Foundation is dedicated to advancing the development of therapies for those living with DMD through advocacy and fundraising. We build awareness about the lived experience of DMD with networking, public speaking engagements, and hosting fundraising events where we tell our story. The name of the foundation honors our son, Alex, and creates a legacy for his life and story. It’s the story of a boy and his dog trying to end Duchenne Muscular Dystrophy. The logo includes the outline of a boy in a wheelchair and a dog and incorporates Alex’s favorite color, red.
Alex’s story, and the stories of those Duchenne patients and families like us, are real and they are raw. We are passionate about telling that story in creative ways so that we can ultimately advance science in meaningful, expeditious ways. The money that we raise is donated to medical research initiatives in partnership with other Duchenne organizations and medical institutions who have helped us in our journey.
Contact Us
Please reach out with any questions regarding Duchenne, our events, donations, volunteering or all things Alex Rezkalla Foundation. We would love to hear from you.