I listen to the stories …

…. of other parents who struggle each and every day. Sleeping by the side of their child each night who is on oxygen and heart monitors. Listening to the cries and screams of their child who is in pain and they do not know why. Dropping everything in an instant to go back to the hospital again. Watching their child seize constantly and helplessly trying different medicines to ease their symptoms. Wondering what his future will be like and how long will he live.  Leaving their careers to be full-time providers and having nightmares about what will happen to their children when no one is there to care for them. Struggling with the fragmented, broken, and bureaucratic system of endless providers, insurance companies, vendors, organizations, and schools to obtain help. And then there are the children who fall between the cracks — helpless and frail — because their parents may be struggling with their own personal life challenges.

We strive to create a community of support for each other. With your investment, AЯRE will study this rare disease, understand the mechanisms behind it, and find a way to improve treatments and care for this vulnerable population.


Your Donation helps


The Giving Circle is a special group of givers who are focused on finding treatments/cure for ASXL syndromes. Please join today and make an even greater impact in the lives of these children.

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Give a sustainable gift

  • Your support will ensure that AЯRE can continue to support desperately needed research and keep the medical/scientific community engaged with consistent & increasing funding levels

  • Assist with finding treatments to extend and improve quality of life for affected individuals

  • Invest for future openings of ASXL Centers of Excellence, which will designate elected hospitals and specialists around the world that can centrally manage and provide exemplary care for ASXL patients and their families

AЯRE Foundation is using DonorBox to securely manage your monthly donations. After a monthly donation is made, a donor will get an email to set up their Donorbox donor account by creating a password. The donation email will be their username.

To edit your recurring donation as a donor, go to and log in to your donor account by clicking the Donor Login link at the top of the page. The advantage of this is that you can update expired cards, modify plan amounts, or pause your recurring plan anytime! More information about editing recurring donation amount as a donor you can find here.

This web page does not provide legal or financial advice, nor is it intended as a comprehensive review of the topic. You should consult your attorney, tax advisor, and AЯRE Foundation before making or planning your gift.