Without change, there would be no butterfly


Thank you to everyone for the tremendous support for the ASXL Rare Research Endowment  (AЯRE) launch!  We are incredibly excited to begin this journey together and would like to share with you a few ways that you can get involved and support AЯRE mission.


AЯRE needs assistance from family, friends, caregivers, and neighbors to help make our vision possible.  We are a volunteer based organization and your support is critical.  Do you have social media or marketing skills, an accounting background, passion for fundraising, organizing events, or other skills that could help make AЯRE successful?  We need you!

Join the Research Roster

For the ASXL1, ASXL2, & ASXL3 families – register your child on our website to be notified about future opportunities to participate in research studies and help AЯRE provide the best tools and resources for our community.  Encourage your fellow ASXL affected families to enroll as well so that we can accelerate research efforts.

Share your stories and knowledge

We want to hear from you!  Share your photos, personal stories, recommended equipment/toys/devices, best practices, and other resources.  This information can be shared with AЯRE community on our Pinterest boards, newsletters, and other social media outlets.  Let’s learn from each other and help our children to reach their potential.  This information can also help physicians and scientists to learn more about ASXL syndromes, help diagnose them, and share information.

Donate & join the Monthly Giving Circle

Donations of any amount are greatly appreciated and are tax deductible.  Share on all social media with the hashtag #IsupportARRE or leverage any other avenue to make donations go viral.  Become part of our Monthly Giving Circle to support our endowment, which will fund initiatives like future potential treatments/clinical trials and the ASXL Centers of Excellence – programs with designated hospitals and specialists around the world who can centrally track, manage, and provide care for ASXL patients & their families.

Remember to sign up for our newsletter to learn more about upcoming events, insights on best practices and care management, and progress against our mission.

Thank you for your engagement and support.  Have a wonderful day!