From March 6 to 8, Gene Gilder of Crowley, representing Louisiana, and his daughter, Margaret Cox, representing Alabama, traveled to Washington, D.C., for the annual March on Capitol Hill to support funding for tuberous sclerosis research in the Tuberous Sclerosis Complex Research Program (TSCRP).
The Gilders — Gene and Raynell — have been involved in raising funds for TS research since their grandson, Michael Cox, was diagnosed with the disorder in April, 2007.
TSCRP is administered by the Department of Defense and is a peer-reviewed program that awards grants competitively to cutting edge research proposals aimed at gaining a better understanding of this complex disorder.
It has enjoyed bipartisan support from members of the House and the Senate. Since fiscal year 2002, Congress has appropriated an aggregate of $71 million for the TSCRP. In fiscal year 2017, the program received an appropriation of $6 million.
The week kicked off Tuesday night, March 6, with the March on Capitol Hill Advocacy Training Dinner, where participants prepared to meet with their states’ U.S. Representatives and Senators the following day.
On Wednesday, supports from across the country (including Community Alliance leaders, TS Alliance board members, staff and volunteers) participated in the March on the Capitol Hill by spending a long day visiting legislators to urge them to continue supporting the TSCRP.
Over the course of the week, the tenacious advocates visited 357 members of the House of Representatives and 84 Senators.
Gene and Margaret, along with a TS Mom, Heather Harden from Mississippi, visited eight Representatives and two Senators representing Alabama, Mississippi and Louisiana. One of the visits was with Congressmen Clay Higgins from the 3rd District of Louisiana.
Margaret has been a part of the Tuberous Sclerosis Alliance since her son Michael was diagnosed at just a few months old.
She has participated and chaired the Alabama Step Forward to Cure TSC family fun walk for the past 10 years and she is currently on the Tuberous Sclerosis Alliance Board of Directors as a parent representative.
This year’s walk will be held Saturday, April 21, in Florence, Alabama.
“There are no ‘walks’ in Louisiana, but we’ve always received outstanding support from friends and TS families in this area,” said Raynell Gilder.
Raynell explained that the Cox family moved to Alabama because the University of Alabama Birmingham hs the only clinic that treats TX in the southern United States.
“Through their treatments, there, Michael has progressed miraculously,” Raynell said. “He’s learning at grade level and participating in some extracurricular areas that we never expected.”
This is also Gene and Margaret’s second year participating in the March on the Capitol.
She states, “I cannot take TS away from Michael but I will always strive to ensure he can have a better life. A better life that will come out of fundraising for research, raising awareness, government advocacy or anything I can be a part of to help find a cure for Tuberous Sclerosis Complex.”
The public is being asked to join in helping make a difference for Michael and for the tens of thousands of families living with this disease by lending support. If you are interested in donation to “Team Michael” please visit the team website: www.StepForwardToCureTSC.org; Florence, AL; TEAM MICHAEL
All donations are secure and sent directly to the Tuberous Sclerosis Alliance.
Anyone in the area wishing to make a donation may call the Gilder’s at 783-3795 or mail a check payable to “Tuberous Sclerosis Alliance” to 19 Governor Edwards Drive, Crowley, LA 70526.
Any support will be greatly appreciated.