For the past 13 years, Alex has battled many surprise, complex medical challenges and struggled daily with everyday living and chronic pain. Many of his experiences are not documented in medical literature so his doctors are guessing at the best ways to manage his symptoms. There are no treatments and no limit to what we do not know.

That’s the difficult reality for families like us, and hundreds of other families around the world living with ASXL-related disorders. But with the ARRE Foundation there is hope for answers.

The ARRE Foundation is bringing together the doctors and researchers needed to build the body of medical knowledge that will guide the care of kids like our and help them live to their fullest potential.

Here’s how your contribution can make a difference:

1. Drug Repurposing Studies: Help us identify potential treatments by repurposing existing drugs and conducting essential follow-on studies. This approach accelerates the discovery of effective therapies, bringing hope to patients sooner.

2. Family Education & Research Engagement: Your support will enhance our efforts to build knowledge and share vital information with families affected by ASXL disorders. By fostering a strong, informed community, we empower families to navigate their journey with confidence and connect them to enroll in important research studies.

3. Scientific Support and Collaborations: Enable us to fund research studies and build robust collaborations between labs, driving faster progress in research. By connecting brilliant minds and resources, we can achieve breakthroughs more efficiently.

4. Development of Antibodies: These antibodies set the stage for groundbreaking research, paving the way for new treatments and cures.

5. Research on Functional Mechanisms: Understanding these functional mechanisms that cause ASXL disorders is key to developing targeted therapies that can effectively combat these conditions.

The ASXL Rare Research Endowment (ARRE) Foundation is a family-led patient advocacy organization focused on advancing knowledge and understanding of ASXL-related disorders (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome) with the goal of developing effective therapies and medical interventions. 

We are raising funds for research, building and continuously expanding the network of clinicians and scientists who are committed to studying the ASXL genes and their associated disorders, developing resources for clinicians and parents to improve clinical outcomes, and facilitating collaborations among health professionals who have experience treating ASXL syndromes.