News

2017 March on Capitol Hill, Sound Bites, Board & Communiy Leadership Meetings and Volunteer Appreciation Dinner Wrapup

From February 28 to March 2, 2017, TS Alliance Community Alliance leaders, Board of Directors members, staff and other supporters converged in Washington, DC for our annual March on Capitol Hill and the Sound Bites fundraising event, as well as the Spring 2017 Board of Directors meetings, Community Alliance Leadership Training, and the much-anticipated Volunteer Recognition Dinner, when the 2016 Volunteers and Community Alliance of the Year were announced.

The week kicked off Tuesday night with the March on Capitol Hill Advocacy Training Dinner, where participants prepared to meet with their State Representatives and Senators the next day.

On Wednesday, supporters from across the country (including Community Alliance leaders, board members, staff and other volunteers) participated in our annual March on Capitol Hill by spending a long day visiting legislators to urge them to continue Federal TSC research funding.  Over the course of the week, these tenacious advocates visited 360 members of the House of Representatives and 93 Senators.

That night, the TS Alliance held a fundraiser at the National Press Club called Sound Bites, An Evening of Food, Wine and Music, where we honored Missouri State Treasurer Eric Schmitt and John and Jordan Richards.  Chris Hawkey served as emcee while musical entertainment was provided by The Golden Gup and The Rhythmhancers. The event was a huge success, raising more than $108,000! You can view the event’s virtual program for more information.


Pictured left to right: Dr. Michael Wong and Eric Schmitt.  Eric was honored for working directly with the Missouri State Legislature to appropriate $250,000 in the state’s 2016 fiscal year budget then $1.25 million in the state’s 2017 fiscal year budget to create and expand the comprehensive Washington University Tuberous Sclerosis Center of Missouri.


Pictured left to right: Jordan Richards, Julie Blum and John Richards. Julie presented the Courage in Leadership Award to the Richards for their commitment to the TS Alliance’s government advocacy efforts.  John was one of the founders of the TS Alliance’s government relations effort to secure annual Federal TSC research funding since 2001.

On Thursday, Community Alliance chairs, Adult Regional Coordinators, Junior Leaders and other volunteers took part in a wide range of Leadership Training sessions led by Vice President of Outreach Dena Hook.  At the same time, the TS Alliance Operating and Endowment Fund Board of Directors participated in meetings most of the day.

On Thursday evening, our annual Volunteer Recognition Dinner was heldThis dinner is always an inspiring and uplifting occasion.  Board Chair Tim Dills kicked off the night by thanking everyone for their hard work and support not only this week but throughout the year, while TS Alliance President & CEO Kari Luther Rosbeck echoed the thanks and appreciation.

After dinner, it was time to present the 2016 Volunteers of the Year Awards, also known as the “Franny Awards” in memory of Fran Ostrow.  Kari Luther Rosbeck then presented the Community Alliance of the Year Award (now called the “Dreamer Award” in memory of Dee Triemer) to the TS Alliance of the Upper Midwest.

Pictured left to right: President & CEO Kari Luther Rosbeck with the 2016 Volunteers of the Year: Margaret Gilder Cox, Shelly Meitzler, Tiffani Whitaker Goff and Rob Grandia. TS Alliance Board Chair Tim Dills is on the far right.

Pictured left to right:  Kari Luther Rosbeck with Kari Ihle, who accepted the Dreamer Award for the TS Alliance of the Upper Midwest.

The TS Alliance truly thanks everyone who who participated in the week’s events and to those who sent letters of support to make the March on Capitol Hill one of the most successful to date.