Aidan’s Army Golfs Fore a Cure
We plan to host our second annual fundraising event – Aidan’s Army Golfs Fore a Cure – on Monday, July 29, 2019 at Forest Lake Country Club in Bloomfield Hills, Michigan.
Last year your generous donations helped raise more than $63,000 to support critical research for a cure and better treatments for all those afflicted with cystinosis. 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 as we fight for a cure for Cystinosis. Our family is forever grateful for your support.
Erin and Jim O’Leary