Hearts for Hadley

05/21/2024

Hi all! The H4H page has been hacked. I'm in communication with FB to resolve the issue. I'm sorry for any inconvenience!

04/07/2024

We spent an incredible weekend with our cystinosis family in San Diego at the CRF Day of Hope conference! The girls had a great time reconnecting with friends and we loved hearing about the latest research and potential new treatments along with updates on the stem cell gene therapy trial. Heading home with so much hope and a full heart! ❤️

10/05/2023

❤️

CRF's mission is to support bench, clinical and translational cystinosis research to find better tre

04/03/2023

The Day of Hope family conference was inspiring, informative, and exactly what we needed to revive our hope. Not only did we get to reconnect with old friends but we made a ton of new ones. The latest research updates are incredibly promising and the 6 patients who have received the stem cell/gene therapy transplant for cystinosis are all doing well and remain off cysteine treatment. I remember hearing about the potential “cure” at our first conference 11 years ago and here we are today…so close! ❤️

04/01/2023

So proud of this incredible girl and the strength she shows every single day! Celebrating our 10th Day of Hope family conference and 10 years since Hadley was diagnosed with cystinosis. ❤️

08/09/2022

Thank you to everyone who braved the heat and joined us for Kegs 4 Kause to raise money for and cystinosis research. We had an awesome turnout and it was great to see so many friendly faces. We are grateful to have such an amazing community of love and support! ❤️