The EveryLife Foundation is a fantastic non-profit organization that supports rare disease patients in self-advocacy and lobbies to advance policies that bring about better research for rare diseases by expediting drug-to-market approvals and securing funding for such research. The foundation was started by Dr. Emil Kakis, a geneticist who advocated for his patient Ryan. Ryan was born with an extremely rare disease (MPS 1), and his parents were told he would not make it past his teenage years. There were no treatments at the time for Ryan.
Dr. Kakis and Ryan’s family were able to raise the funds necessary to bring about a research trial and a drug to treat him. Ryan went on to graduate from college in 2017, which was 9 years after his first treatment. Despite the drug’s life-saving capabilities, it still took another 11 years for the drug to get approved by the FDA. This is when Dr. Kakis knew something needed to be done to expedite orphan drugs, and he started the EveryLife Foundation. Those with rare diseases need treatment as soon as possible when the results can be life-saving. While proving safety is important, it is not the primary goal for these patients. It’s efficacy. They will die without treatment.
The EveryLife Foundation received the 2025 Platinum Seal of Transparency Award for their transparency and accountability in the handling of their financial accounts. They are fighting a very important cause. Please click below if you would like to donate and help others like Ryan.
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