Representing our ASXL community at Family Advocacy Day 2025
Our Founder and Chair, Laura Badmaev, and her son Alex—who has Bohring-Opitz Syndrome (ASXL1)—will travel to Washington, D.C. this June to represent the ASXL community at Family Advocacy Day.
Held on June 11, this annual event is organized by the Children’s Hospital Association (CHA) to bring the voices of children with medical complexities and their families directly to U.S. lawmakers. Now in its 20th year, Family Advocacy Day is a powerful opportunity to share lived experiences and push for policies that make a meaningful difference.
Why it matters for ASXL-related disorders
Individuals with ASXL-related disorders, which include Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2), and Bainbridge-Ropers Syndrome (ASXL3), face a wide range of complex medical needs. For many families, accessing the specialized care they need means navigating systemic barriers, geographic limitations, and workforce shortages. Advocacy efforts like this are essential to building a healthcare system that works better—for all of us.
Laura and Alex will be advocating for policies that help protect and improve access to pediatric care, including:
Strengthening the pediatric health care workforce through better training and support for doctors, nurses, and allied health professionals.
Safeguarding access to care by preventing harmful policy changes and making sure vital programs meet the needs of medically complex children.
Enhancing Medicaid to ensure consistent and adequate support for the pediatric provider workforce.
Expanding access to pediatric mental and behavioral health services, a critical need in our community and beyond.
Speaking up for families like ours
At the ARRE Foundation, we believe that the lived experiences of our families should inform policy and research. That’s why our advocacy—whether it’s on Capitol Hill or through programs like our ASXL Research Symposium—always centers families. We’re grateful to Laura and Alex for sharing their story and helping lawmakers understand why strong pediatric policy matters.
