A few weeks ago something stirred inside me. I was dared to dream and as hard as I tried to not go there, I did. I dreamed of a world where Rett Syndrome is treatable. Then I woke up the next day and learned something very interesting and disturbing. There are two trials, for drugs to help and both are half full. The thing holding research back is participation. This broke my heart. Immediately I applied and figured a way for us to be able to go. Then I tried to figure out how to get more people to do the same. The problem is, the cost is very high and people who have children with Rett Syndrome are already paying a lot of money for doctors, equipment and therapy. Rettland is not as glamorous as it sounds and it is very expensive. So, here is my solution, we will see if it works. I have started a fund to award funds to families that enroll, in an effort to make the leap more manageable for them. This is a huge feat. Staring down Rett Syndrome and taking a whack at beating it is not for the faint of heart. That is why I need your help. Feel free to support and share this project with anyone that might be able to help. Together, we are stronger and we will get to the day when doctors tell families of treatment options in the same breath that they say the test came back positive for Rett Syndrome. Thank you for you help.
UPDATE: Realizing the limitations to a gofundme campaign Captain Awesome and I sat down and dreamed a little bigger. We have started the Rettland Foundation and are now a registered 501c3 nonprofit. Our goal is simple: to prepare and support families as they obtain treatment for Rett Syndrome. You can learn more at rettland.org
You can click here to donate to the Rettland Foundation