In memory of Aidan Stanistreet
A message from Nadine and Jacs Stanistreet...
We are raising money in honour of our baby boy Aidan to support research and families with FOXP1 syndrome and Pulmonary Hypertension, two extremely rare conditions that Aidan had.
PH is a life limiting disease with no cure (PHAUK). Little is understood about FOXP1 which is a neurodevelopmental syndrome (FOXP1). It is not known to cause PH however it is known to affect the development of the brain, heart and lungs.
Aidan spent many of his 12 months in hospital. He had the best care possible from the experts in PH with an exhaustive list of procedures at Great Ormond Street Hospital and Alder Hey, yet still his little body was not understood.
It wasn’t strong enough to do justice to the beautiful little boy inside but he handled his challenges with grace and he brought us all so much happiness with his smile. As well as all of the hearts he touched, Aidan's legacy will be to move forward the understanding of FOXP1 Syndrome and PH disease.
The mission of the International FOXP1 Foundation is to build a global community that empowers and supports families and individuals with FOXP1 syndrome by sharing knowledge, inspiring hope, encouraging research, and raising awareness.
The International FOXP1 Foundation is a 501(c)(3) non-profit organization registered in the State of Delaware. Our United States federal tax ID number is: 85-4079051. Our determination letter and our Form 990-N are available from the IRS website. Your contribution may be tax-deductible to the extent allowed by law.