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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

Name: Adrianne Cohen
Email: adriannecohen@gmail.com

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.