On October 13th, the Rett Syndrome Research Trust’s largest annual fundraiser will take place in Los Angeles. Jenny and I are co-chairing this year in addition to chairing the auction. We have set a goal of raising $1MM at this event this year because the urgency is real. Maggie is getting older, and Rett Syndrome continues to progress. Meanwhile, a cure is not just possible, but probable at this point. With proper funding that cure can come sooner rather than later and Maggie can enjoy being a kid, free of the struggles of Rett Syndrome.
Everyone is welcome to attend this event. If you can’t attend, donations are always welcome and every dollar really does matter. If you can’t do that, but would like to donate something to the auction – we would welcome any support you can give.
This event and others like it around the country have allowed RSRT to fund things like this:
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Even if you don’t fully understand the science, it’s hard not to understand the promise treatments like this hold.
Thank you for being a part of this. We are going to cure this together.
I have seen people run races for causes. I have heard that this is a thing people do. But I am not a runner. I am not a biker. I am not a swimmer. I am just a dad who is willing to do anything and everything I can to raise awareness and dollars for a cure. Even if that means breaking my own body.
Four months ago Jenny forwarded me a link to the Malibu triathlon. She told me Shelly was running for Maggie and the subtext was clear – if Shelly, Maggie’s aide, is going to run, then AJ, you have to as well. It didn’t take any arm twisting at all. I had been looking for something like this to do. It’s been an incredible experience, just training for this race. Every time I get tired, or decide it’s something I just don’t want to do, I think of Maggie. I think of how much I would like her to even have the choice of telling me she doesn’t want to do it.
I don’t have that option. Maggie doesn’t get that choice. At least, not until there’s a cure or treatment which I keep being told could happen within the next few years, if we raise enough money to make it happen.
So I’m doubling down. Maggie will turn 7 in just two months. Her childhood years are disappearing and there’s nothing we can do to slow the sands of time. So, we have to speed the sands of research. We have to make that cure happen faster. So I’m running a triathlon this month. Next month is the Rett Gala in LA Jenny and I are co-chairing this year (please let me know if you have anything you’d like to put up for auction). November 7 is the Rett event in New York I will be attending.
The science is precipitously close to having something that can help Maggie. Maggie can’t wait any longer. So I’m running, biking and swimming as fast as I can. The next time I do this, I hope she will do it with me.
You can donate to support our efforts at rettgive.org/magnoliashope