Congratulations to the Tuberous Sclerosis Alliance for New Milestones of Congressional Support

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By Mark Vieth, Senior Vice President, CRD Associates

On March 2, the Tuberous Sclerosis Alliance sponsored a “March on Capitol Hill,” bringing more than 100 patients and family members from across the nation to advocate for increased research funding for tuberous sclerosis complex (TSC), a rare genetic disorder that can result in severe neurological complications. Specifically, these grassroots 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. They were joined in their efforts by dozens more, including advocates from the LAM Foundation, who advocated with Members of Congress through their state offices.

Once again, the Alliance demonstrated the power of grassroots advocacy and “shoe-leather” lobbying, meeting with nearly every House and Senate office. This year, these dedicated individuals collectively helped to secure bipartisan support from 164 Democrat and Republican Representatives on a bipartisan “Dear Colleague” letter authored by Reps. Loretta Sanchez (D-CA) and Mike Fitzpatrick (R-PA). They also gained endorsements from 25 Democrat and Republican Senators on a similar letter circulated by Senators Johnny Isakson (R-GA) and Chris Murphy (D-CT).  These letters, calling for continued funding for the TSCRP, were delivered this week to the House and Senate Appropriations Defense Subcommittees.

The 164 signatures secured for the Sanchez-Fitzpatrick letter far 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 officials to support their cause.  Every advocate who participated in the March on the Hill demonstrated that even in times of gridlock and partisanship, each person can make a difference.

Congratulations 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