A letter from Colleen, our founder
I sit writing this at a time that our community is broken-hearted. One of the heros enrolled in a clinical trial for Rett Syndrome has passed away. This of course brought me back to the day that our Claire passed in 2021. While that day had been the most devastating thing I’d gone through in life, I remember how the thoughts and prayers of our Rett family from around the world carried us. Friends stepped up and took action on my behalf when I was incapacitated, helping in ways I didn’t know I needed.
For more than a decade, Rettland Foundation has been supporting families as they participate in clinical research for Rett Syndrome. In this time of unprecedented research, with an anonymous hero that has fallen, I find myself wanting to help, like so many of us do. Yet knowing what I do about grief, I realize the family might not be ready to receive the overwhelming amount of love we have to share with them. This causes me to hesitate. But if they are wanting and needing the support, I want to make it available and easy for them.
Since supporting families in trials is what Rettland Foundation does, we have created a Hero’s Memorial Fund specifically for this family. All donations made from now until December 24, 2024 will go directly to the family, with funds transferred by the end of the year. Given the sensitive nature of participant anonymity, if we are unable to make contact with a representative of the family by the end of December, refunds will be issued to everyone who has donated.
You can send funds by using our PayPal link
or mail payments to Rettland Foundation PO Box 1282 Temecula, CA 92593