TS Alliance of Washington, DC/Virginia

EST. 2002

Click here for a description of our Community Alliance program.

The TS Alliance of Washington, DC/Virginia is a group of TSC individuals, families, healthcare providers, board members, and volunteers. This group is led by volunteer leadership dedicated to furthering the mission of the TS Alliance in their local state(s) or region by dedicating themselves to finding a cure for TSC and improving the lives of all of those affected.

Volunteer Leadership

Chair

Name: Kathi Dills
City, State: Great Falls, VA
Phone: 703-444-9512
Email: kteach599@msn.com
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: I am the mother of a severely-affected 38-year-old son with TSC.  He was diagnosed at six months old.  My husband and I have been involved on and off over the past 36 years when we heard about the National Tuberous Sclerosis Association, now TS Alliance, but after I retired as a teacher in 2008, we have became more involved in the Marches on the Hill, the National Walks and the other DC events. My husband now also serves on the TS Alliance Board of Directors.

Vice Chair

This position is currently open. If you are interested in the Vice Chair position, please click here for a position description and/or to apply.

Step Forward to Cure TSC Walk Chair

Name: Lauren Shores Shillinger
Address:  5905 Union Ridge Drive, Adamstown, Maryland 21710
Phone: 240-361-8399
Email: lauren.shores@gmail.com
Connection to TSC: Parent

Regional Leadership

Adult Regional Coordinator

Adult Regional Coordinators act as the connection for adults diagnosed with TSC to connect with other adults within their region. They will be knowledgeable about resources, events, support meetings, conferences and any new research on TSC that pertains to adults with TSC. They provide support to the Community Alliances in their region in developing a welcoming and inviting atmosphere for adults with TSC in order to promote adult involvement and support within the Community Alliance.

Adult Regional Coordinator, Region 8

States served: DE, VA, MD, NC, SC, WV, D.C.

kathy-henkelName: Kathy Henkel
City, State: Waynesboro, VA
Phone: 540-949-0582
Email: uneakmom@gmail.com
Other volunteer positions held in addition to Adult Regional Coordinator: None
Connection to TSC: Adult with TSC and Parent of an Adult with TSC

Dependent Adult Transition Resource Coordinator

Dependent Adult Transition Resource Coordinators are knowledgeable in state resources, events, support meetings, conferences, and any new research on TSC that pertains to dependent adults and transitioning young adults with TSC and their caregiver.  The Dependent Adult Transition Resource Coordinator will work collaboratively with their Community Alliance(s) in supporting and connecting dependent adults, transitioning young adults, and their caregivers to state resources.

This position is currently open. If you are interested in the Dependent Adult Transition Resource Coordinator position, please click here for a position description and/or to apply.

Find a Local TSC Clinic

To find the TSC Clinic nearest to you, visit the TSC Clinic page.

Upcoming Events

Visit www.StepForwardtoCureTSC.org to find a walk nearest to you.

Don’t Miss Any Updates!

Click here to join the mailing list for the TS Alliance of DC Metro and be notified of all upcoming events.

You can also visit us on Facebook to receive the latest Community Alliance updates!

If you would like connect with other TSC individuals or family members in your state via phone or email, visit our TSC Connect page to find a list of individuals in your state that you can contact any time.

2017 March on Capitol Hill, Sound Bites, Board and Community 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.