Join The Fight

Please help raise funds to support research on the MECP2 Duplication Syndrome

Now is the time.  We can’t wait any longer.  Our children’s lives are at stake.  Please help by coordinating a fundraiser or donating money to support ongoing research at Baylor College of Medicine.

I have chosen Dr. Melissa Beth Ramocki from Baylor College of Medicine and the Texas Children’s Hospital as the individual for whom I am raising money.  Dr. Ramocki is an academic physician scientist who has chosen to work towards a better understanding of and treatments for MECP2 Duplication Syndrome.  She is very committed and passionate about her work.  Furthermore, Dr. Ramocki works with Dr. Huda Zoghbi who is also doing amazing things pertaining to research for this disease.

Let’s work together to help make treatments for MECP2 Duplication Syndrome a reality.  Funds raised will be used for pre-clinical drug trials in mouse models and for studies to better understand the disease process in human patients. Please commit yourself in joining me to fight for a cure.  I can assure you that Dr. Ramocki is committed.  Baylor College of Medicine does have a non-profit status so all donations given to Dr. Ramocki’s research efforts are tax exempt.

When you donate to Baylor College of Medicine, you get to decide how you want the funds distributed.  Please check out the "HOW TO DONATE" tab for more information.

-Pam Albert

 

The 401 Project

The 401 project represents the donation of $401.00 from the families of 200 children by April 1st 2013. One hundred percent of these funds will go towards a potentially life changing experiment underway at the Baylor College of Medicine headed by Huda Zoghbi. With funding in place, the experiment aims to REVERSE this syndrome in the lab.

The Duplication Total as of July 11, 2012 is $204,276!

For more information on The 401 Project or to donate, visit http://www.401project.com/.

 

MECP2 Duplication Syndrome Research Update from Dr. Ramocki

March 2011

Why Fundraising is Important:

Previous fundraising efforts have helped researchers to complete characterization of the MECP2 overexpression mouse model and to initiate studies designed to address why affected boys have problems with their immune system which lead to recurrent respiratory tract infections. Researchers are characterizing abnormalities in the blood samples of affected boys and in the mouse model. Significant progress has also been made towards understanding why this genomic problem occurs in the first place. Ongoing clinical and molecular studies are helping researchers to understand how genotype affects phenotype and the natural history of disease in preparation for future clinical trials when that day comes. Preclinical drug trials in the mouse model are ongoing.

The upcoming MECP2 Duplication Syndrome Family Conference scheduled for May 25-27, 2011 is critical to ongoing research because the researchers will be able to meet with families and learn more about the syndrome, and this will be an opportunity for researchers to explain their work and to collect the blood samples necessary to support these ongoing studies.