Sim’s Race Day Fundraiser
Sim’s race
On 7 May, Sim is running (and climbing and crawling and hurdling) the Rat Race Dirty Weekend. And he’s not just getting through the course and calling it a day — he’s doing it twice over and will complete two laps of this monster obstacle course.
“I’ve done it once before,” Sim says, “And I vowed never to do it again as it was the hardest thing I’ve ever done.”
Sim is challenging himself in honor of the challenges his colleague Laura and her family live through every day with a child with an extremely rare, extremely complex genetic disorder.
Sim’s cause
Sim is racing to raise funds for the ASXL Rare Research Endowment Foundation (ARRE Foundation), an organization founded by Laura after her son Alex was diagnosed with Bohring-Opitz Syndrome.
Bohring-Opitz Syndrome is one of three ultra-rare genetic disorders caused by a mutation in the ASXL genes. Common features of these disorders include intellectual disability, developmental delay, extreme feeding difficulties and gastrointestinal complications, low muscle tone, seizures, and more. Learn more
The ARRE Foundation raises funds for to support research and education that lead to improved quality of life for individuals with ASXL syndromes.
What if your loved one had a disorder so rare that no one had ever heard of it before — let alone knew how to treat it?
Meet Sim’s colleague Laura and her son Alex
Alex has a rare neurodevelopmental disorder called Bohring-Opitz Syndrome that affects nearly every aspect of his body and his life.
With sparse research and no blueprint for Alex’s care, Alex’s mom Laura founded the ARRE Foundation in 2018 to drive research and build the body of knowledge of how to care for people with disorders caused by mutations of the ASXL genes.
Watch Laura give a tour of Alex's room with all of the equipment he uses to stay healthy and engaged with the world around him.
Make your contribution
Thank you for your generous donation! From research grants for scientists to educational events for families, your gift to the ARRE Foundation is supporting a brighter future full of knowledge and hope.
American Express employees: Your gift may be eligible for a company match if you are based in the U.S. Please follow the instructions in your email confirmation to double your contribution!
Alex doing some training of his own
The ARRE Foundation is a 501c3 nonprofit organization (tax ID 82-3890665). Donations are eligible for a U.S. tax deduction to the fullest extent of the law.
You will receive an automated receipt by email after completing this form. If you have any questions about your gift, please contact Amanda Johnson at amanda@arrefoundation.org.