Rare Disease Research Advocates Demonstrate the Power of Grassroots Advocacy

by Mark Vieth, Senior Vice President

Congratulations to the Tuberous Sclerosis Alliance!!

During the week of March 3, the Tuberous Sclerosis Alliance sponsored a “March on Capitol Hill,” bringing more than 80 patients and family members from across the nation to advocate for increased research funding for tuberous sclerosis complex (TSC) research, a rare genetic disorder that can result in severe neurological complications.  Specifically, advocates were asking their senators and representatives to sign onto Dear Colleague letters in support of the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense.

In this day and age of cynicism and frustration with the legislative process, nothing is more refreshing than seeing citizen action in motion -- with powerful results.  Congratulations are in order to these dedicated individuals, who collectively helped to secure the support and signatures of 110 Democratic and Republican Representatives on a bipartisan Dear Colleague letter of support from Representatives Loretta Sanchez (D-CA) and Mike Fitzpatrick (R-PA).  This letter, calling for continued funding for the TSCRP, will be delivered later this week to the House Appropriations Subcommittee on Defense.

The 110 signatures secured for the Sanchez-Fitzpatrick letter greatly exceeds the numbers set in previous years, and would not have been possible without the time and commitment of ordinary Americans who came to Capitol Hill to ask their elected representatives to support their cause.  Every advocate who participated in the March on the Hill demonstrated that even in times of gridlock and partisanship, one person can make a difference!

Congratulations again to the Tuberous Sclerosis Alliance.  We are honored to have them as a client!

Lisa Ellington

Big Thinkery, LLC, 1011 Kenilworth Court Northwest, Concord, NC, 28027