Another win for Aidan’s Army! Over 100 friends and family members from across the country joined the fight to cure cystinosis on July 29, 2019, at Forest Lake Country Club in Bloomfield Hills, Michigan. Aidan’s Army is strong and raised over $73,000 for cystinosis research. We are forever thankful to our amazing donors and cannot wait to host you again next year!
Save the Date: Monday, July 27, 2020, Forest Lake Country Club, Bloomfield Hills, Michigan.
Thanks to the incredible work of the Cystinosis Research Foundation, we are ecstatic to report that the FDA has just approved a stem cell and gene therapy clinical trial that we are hopeful will lead to the cure for Aidan and make this terrible disease obsolete.
Aidan was diagnosed with Nephropathic Cystinosis just before his first birthday. Cystinosis is an extremely rare metabolic disease that affects every cell in the body, eventually leading to widespread organ and tissue damage. The doctors warned us that this disease can require more medication than most other known diseases, and they were not exaggerating.
Aidan takes over 20 medications every day, which is burdensome for an active three-year-old; however, thanks to these medications – we are happy to report that he is doing great! He’s already attending school and loves playing with his new friends. He is also currently obsessed with dinosaurs, sharks, and playing/harassing his dog Gus. Even though he has already overcome and will continue to face more struggles than some of us will experience throughout a lifetime; he continues to wake up every day with a huge smile on his face, happy to conquer another day. While Aidan’s treatment slows the progression of this disease – there isn’t a cure…yet. With your support, we can change that – we are very close.
Many thanks to our amazing family, and best friends Katie and Bob Emerine for hosting this event – we’re blessed by your unwavering love and support.
Please join Aidan’s Army next year as we fight for a cure for Cystinosis. Our family is forever grateful for your support.
Erin and Jim O’Leary
Aidan’s Army Golfs Fore a Cure Raises $73,000 for Research