The Autosomal Dominant Optic Atrophy Association (ADOAA) was created to raise awareness about ADOA and to help fund the medical research to find a cure.  ADOAA is a qualified 501(c)(3) non profit tax-exempt charity organization. By sharing our story, learning your story and keeping you informed and updated on the most recent research and developments, we can join together in the fight against this disease.

We are Adam and Lindsey Allen, founders of the ADOA Association. Our daughter, Sofia, was diagnosed with ADOA in 2012 when she was three years old. This was a very difficult, emotional, and confusing time for our family. ADOA is a complicated diagnosis because it is a rare condition that affects each person differently. Through our research and countless doctor visits, we learned that children living with ADOA will progressively lose their vision over time and there is no way of knowing if or when the deterioration of the optic nerve and other nerve damage throughout the body will stop. Currently, there is no treatment, cure, preventative measures, or proper funding for the research for a cure for ADOA. After years of searching for answers and guidance from doctors about what our next steps should be, we decided to start the ADOA Association. Our mission is to connect everyone affected by ADOA, by providing a place to find useful information and answers relating to this condition. We hope to help every family living with ADOA find the answers they are looking for and to join together to ultimately help fund the medical research for a cure.


There are many ways you can help raise funds for the medical research to find a treatment and a cure for Autosomal Dominant Optic Atrophy. You can make a one-time donation, become a monthly donor, host a fundraising event in your area, or register for one of the events held by the ADOA Association. We hope that you share our passion to find a cure and want to get involved with our mission. Learn more on how your donation and participation will help make a difference for a child living with ADOA.



Dominant Optic Atrophy affects many lives, yet there is a huge lack of public awareness. Through our efforts, we hope to draw attention to ADOA and raise awareness by educating others on the debilitating factors of this disease. We are dedicated to answering your questions and keeping you informed on current research. If you or a loved one has been diagnosed with ADOA please join our database to stay connected with ADOAA and the ADOA community.

ADOAA is a qualified 501(c)(3) tax-exempt organization.  All your contributions and gifts are fully tax-deductible.
Call us to learn more about ADOA


94 Bethel Court
Port Matilda, PA 16870
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