RETT SYNDROME RESEARCH TRUST WEBSITE

RSRT is supporting a project that will screen FDA approved drugs and compounds in a mouse model of Rett Syndrome. The project will take place in the lab of Andrew Pieper at UTSW. To learn more about this project please visit the RSRT website.

In late September we introduced the Sponsor a Drug initiative in conjunction with the launch of our website. As part of that initiative we invited families to recruit their relatives/friends/colleagues to sponsor drugs in honor of their child. The family with the most drugs sponsored by January 15 wins a week-long vacation for two to Ireland.

We are pleased to introduce the winners: Kevin and Dominique Coloton from St. Paul, Minnesota. Their daughter, Catalina, was 21 months old when she was diagnosed in September with Rett Syndrome. The Coloton’s raised over $23,000 for this initiative. We are extremely appreciative of their efforts and for the generosity of their relatives and friends. Dominique, a physician in both internal medicine (adults) and pediatric medicine, and Kevin, an executive at Target Corporation in their Health Care division, comment on their efforts with the Sponsor a Drug effort:

“While we came to terms with Catalina’s diagnosis, we spent significant time learning about Rett Syndrome, resources for families, and ongoing research in areas that could impact Rett Syndrome. During this time we were impressed with RSRT, the mission, and the research that they are funding, so we decided to ask our friends and families to make donations to this organization in honor of Catalina. We composed an email to send to all of our friends and family sharing with them our sadness and grief over lost dreams, yet highlighting our hope for a cure. We enthusiastically talked about how hopeful we are that a cure will be found in her lifetime and how the dedicated researchers around the world, especially those associated with RSRT are working hard to help find the key to unlocking Rett Syndrome. We are so thankful to all those who have chosen to support Rett Syndrome research, although we know that our work is far from complete. We as a family and as a community need to continue to be dedicated to promoting the importance of this research in order to find a cure for our daughters around the world with Rett Syndrome.”

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The Colotons will be staying at the Ashley Park Bed and Breakfast in Tipperary County, Ireland. The week-long stay at the B&B is graciously offered by the family of Margaret McKenzie from London. Margaret’s daughter, Katherine, who also had Rett Syndrome, died last year at the tender age of 8. Margaret and her family are hopeful that Rett research will spare future girls the suffering that Katherine endured and that the McKenzie family continues to deal with.

We thank all our families for their participation and in particular Paula and David Southren, Jennifer and Tommy Lopez, Ingrid and Peter Harding, Bridget and Scott MacDonald and Pam and Tony Scarano. We also thank the Israel Rett Syndrome Center, Stichting Rett Syndroom and Mikyla-Cure for their support.

Please know that we continue to need your support. We are 1/3 of the way to our goal with just over 1000 drugs sponsored. While a trip to Ireland is wonderful we all have our eye on the real prize. We still need to recruit 2000 additional drug sponsors. Please consider joining our efforts. Contact us to join our efforts.

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