The MECP2 Duplication Syndrome Fund exclusively supports projects devoted to the study and means of treatment of MECP2 Duplication/Triplication Syndrome. 100% of every dollar contributed is invested in research – not a single penny goes to overhead. The Fund puts the intellectual and scientific resources of RSRT immediately to work for the MECP2 Duplication/Triplication Syndrome community.
The dramatic reversal of Rett symptoms in mice described by Adrian Bird in 2007 opened the field to questions that now must also be explored in the MECP2 Duplication Syndrome. We know that in Rett, restoration of proper MeCP2 function in mice only days away from death brought them back to health. Would elimination of the influence of excess MeCP2 in the Duplication Syndrome have a similarly dramatic effect?
The first project funded by the Fund will answer this question. The lab of Huda Zoghbi at Baylor College of Medicine was awarded $236,000 for a 3-year project aimed at answering whether restoring proper amounts of Mecp2 in an animal model of the syndrome will reverse symptoms. If symptoms can be reversed is there a time period or can reversal also occur in adults, as in Rett?
A second award was recently made. This project will be undertaken in the laboratory of Kevin Foust and will use a gene therapy approach to knocking down the extra copy of MECP2.
A variety of other projects are in the pipeline awaiting funding. These include projects aimed at better understanding and addressing the immune issues in the syndrome and genetic and compound screens aimed at identifying genes and compounds which can modulate levels of the protein.
To date $352,000 has been raised for the Fund.
We hope that the families affected by MECP2 Duplication Syndrome and those who know and care about them will be encouraged and energized by the possibilities that are waiting to be explored with this new framework in place. Your participation and commitment are more than welcome: they are a necessity. It is your energy that will fill this new structure and determine the speed and intensity of MECP2 Duplication Syndrome research.
You can support the MECP2 Duplication Syndrome Fund through the following ways:
Instantly through PayPal
Send check or money order
Rett Syndrome Research Trust
67 Under Cliff Road
Trumbull, CT 06611
(Please note in the memo line that funds should be allocated to the MECP2 Duplication Syndrome Fund.)
By credit card
Click here to make a secure online donation. (Please note in the dedication that donation should be allocated to the MECP2 Duplication Syndrome Fund.)
Wire transfer or gift of stock
Contact us for details.
Plan an Event
There is a multitude of ways to raise research funds – from a bake sale to running a marathon and everything in between. FirstGiving.com allows you to raise funds easily online. Visit their site for ideas, tools and support.
Send a Solicitation Letter
Parenting a child with a disability is a challenge. Understandably, many families do not have the time or energy to plan an event. Sending a solicitation letter to relatives/friends/colleagues/neighbors is an effective way to raise research funds without the effort involved with planning an event. Ask grandparents, uncles/aunts, godparents, close friends to also send a letter on behalf of of your child to their network. Please contact us if you would like to see sample letters.
Make a birthday, anniversary, wedding or any special occasion even more meaningful. Use Firstgiving.com as your online registry or contact us to order donation envelopes that you can distribute.
Corporate Matching Gifts
Your place of work may offer a matching gift program, which could more than double your donation. Please contact your Human Resource Department for details. Forms can either be mailed to us at 67 Under Cliff Road, Trumbull, CT 06611 or faxed to 203.445.9234.
Donations to the Trust are tax deductible. Our Tax ID (EIN) number is 26-0687439.