On November 21, Neurogene put out a statement stating:
The photo is credited to wowacom on Freeimages.com.“Earlier this week, we shared that a girl who received the 3E15 vg dose of NGN-401 gene therapy in our ongoing Phase 1/2 clinical trial for Rett syndrome was in critical condition. Tragically, she has passed away following complications from a rare and life-threatening hyperinflammatory syndrome associated with systemic exposure to high doses of AAV gene therapies. The entire Neurogene team is sending our deepest condolences to her family and loved ones and wishing them strength as they navigate life without their precious child. While this is a somber moment for everyone in the community, Neurogene’s mission to bring forward new treatments to help families affected by Rett syndrome is unwavering.”
There is no measure by which to compare such a sacrifice to. In honor of this precious child, Colleen English of Rettland has put out the following:
Hero’s Memorial Fund
A letter from Colleen, our founder.
I sit writing this at a time that our community is broken-hearted. One of the heroes 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
If you would like to send a card or message of support, we are doing our best to find a way to pass them on to the family when they are ready to receive them. From the bottom of my heart, I thank each of you that is seeking to support this family, you are what make Rettland the special place that it is.
With gratitude,
Colleen
In addition, my donation page is set for Rettland already and you may donate through there.
