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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. 



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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 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. That's why we decided to start the ADOA Association. Our mission is 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.


United Mitochondrial Disease Foundation (UMDF)


We are the ADOA ambassador for the UMDF. We understand that Autosomal Dominant Optic Atrophy is a mitochondrial disease and that we need to keep up-to-date on mitochondrial news and research.

Cure ADOA Foundation

A foundation formed in the Netherlands in an effort to find out more about ADOA and potential cures.

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