Announcing the Launch of ASXL Rare Research Endowment Foundation
We are thrilled to announce the launch of the ASXL Rare Research Endowment (AЯRE) Foundation (www.arrefoundation.org)! AЯRE will provide sustainable support for evidence-based research that will increase our understanding of the ASXL genes and improve the treatment of individuals with congenital ASXL mutations.
Our ASXL families -- who have Bohring-Opitz Syndrome (ASXL1), Bainbridge-Ropers Syndrome (ASXL3) and Shashi-Pena Syndrome (ASXL2) – face extraordinary challenges and uncertainty. AЯRE will bring together the medical and scientific leaders to study ASXL genes and clinical challenges so that we can improve care management strategies, assist with patient advocacy, and ultimately introduce potential treatments/cure.
I would like to thank our incredible team of officers & board volunteers for all their efforts to make this possible! We are on this journey together and need your help to realize this vision. Please consider to rally family & friends to support this important cause through volunteer efforts and donations.
AЯRE has more exciting news and actionable information ahead. Check out our website (www.arrefoundation.org) to learn more about our plans, join us on Facebook @arrefoundation and sign up for our newsletters.
Our ASXL children are an incredible inspiration and have changed our perspective on life. Let’s join together so that we can become stronger advocates and provide our children with the best lives possible.
I am excited about our road ahead and look forward to hearing from you!
Chair, AЯRE Foundation