Rett, Resilience and Running the Boston Marathon
This month, I have the honor of being a member of Team Rett, a five-member team of runners who are part of the New England-based Rett Syndrome Angels. On April 17, we will be stepping off the Boston Marathon starting line to run 26.2 miles to raise funds for research and community engagement for Rett families.
For the 12th consecutive year, the Rett Syndrome Angels is fielding a Boston Marathon team of runners. Team Rett will run in the modern world’s oldest marathon to raise funds and awareness for the Rett community in New England. Originally established in 1988 and formerly known as the Rett Syndrome Association of Massachusetts, Rett Syndrome Angels provides critical resources for Rett families from initial diagnosis through everyday living. By funding research, it is their hope that one day Rett syndrome will be history.
During the time I’ve spent with the Rett Syndrome Angels as I’ve prepared for the marathon and through my role at Acadia, I have seen firsthand the challenges that families of children with Rett syndrome face, the heartbreak of watching their child lose the ability to speak, walk, or even eat. But I have also seen the resilience of these families – like Minna’s and Lucy’s. They never give up hope, and they never stop fighting for their children.
Acadia has been engaged with and dedicated to the Rett community for many years. The recent FDA approval of the first-ever treatment for Rett syndrome means that we are delivering on our mission by providing tangible support and helping to elevate these precious lives.
As the parent of a young daughter with another rare genetic disease, I’ve learned that there are many unknowns and unpredictable hurdles to cross. But there is a small group of people who do know what you’re going through, and the Rett Syndrome Angels are those people, that backbone, for many families facing Rett. The organization has a long history of personal connections and commitment and is dedicated to positive advocacy. They are incredibly passionate and smart people, and I am proud to be part of that team.
Running a marathon begins with a single step. Before the 2020 pandemic, I had never run more than a mile at a time in my life. But nine months into the pandemic, daily runs became my way to manage the added stresses we were all experiencing during that time.
This routine quickly grew into a habit, and, within a year, I was averaging 30 miles in a week. So, I decided to challenge myself to complete a marathon. The Ventura Marathon – in February 2022 – was my first, and this past January I ran my second. I was thrilled to have the opportunity to apply for Team Rett; running the Boston Marathon meant I could use my newly found hobby as a way to show my support for Rett families and help raise critical funds.
The world needs to know more about Rett and these amazing families who are fighting for their children every day. Continued momentum, focus and dedication will get us there. Visit RSAngels.org to learn more about the Rett Syndrome Angels. See you at the finish line!