The Project

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

3 thoughts on “The Project

  1. Kathy Meisner says:

    Wow! You guys are awesome! We wanted to help out with the trial but could not figure out how to get her there, due to the finances involved. We decided to just take the leap and do the next thing until we just couldn’t do anything else. I was told about the help that you are trying to provide for families attempting to participate. If she is approved, we will apply for a scholarship. I would also like to post what you are doing on FB. There are a lot of people who love and care about Rachel and I know that they will want to help. Thanks again for all you are doing.
    ~Kathy Meisner (Rachel/21)

    1. Thank you Kathy! We are in the final process of getting our website up for the Rettland Foundation. For now we are using our facebook page https://www.facebook.com/rettlandfoundation to share the details and accept donations. We would love it if you want to share what we are doing! Feel free to email me at colleen@rettland.org and I can let you know what we can do to help you as you participate in the trial. Again, thank you, for your kind words and for taking those brave steps out, for your daughter and for all of us.

  2. Kathy Meisner says:

    When I read what you said, I couldn’t help myself…I started to cry. I think you will understand…I see my sweet daughter’s face and all that Rett has cost her, then so many more faces, and then the very notion of a possible hope! It’s just too much…Thanks again. I will promote what you are doing on our FB pages.

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