TSC Alliance of North Carolina

EST. 2016

Click here for a description of our Community Alliance program.

The TSC Alliance of North Carolina 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 TSC Alliance in their local state(s) or region by dedicating themselves to finding a cure for TSC and improving the lives of those affected.

Volunteer Leadership

Chair

Name: Karen Johnston
City, State: Raleigh, NC
Email: Karen.m.whittington@gmail.com

Karen Johnston lives in Raleigh, NC with her husband, David, and children, Ella Grey and Ethan. She works as a pharmacist in mental health. Her journey with TSC and interest in becoming an advocate started in 2017 with the birth of her son, Ethan. Karen is excited and honored to serve as the Chair of the TSC Alliance of North Carolina to raise awareness and help to build outreach programs to provide support for families affected by TSC.

Vice Chair

Name: Kristen Moore
City: Charlotte, NC
Email: kristen.robinson.moore@gmail.com

Kristen Moore is originally from the Philadelphia, Pennsylvania area but spent most of her youth in Georgia, Alabama and Mississippi. She studied marketing, advertising and public relations at the University of Mississippi and The University of Alabama. Kristen has served in various marketing and communications roles across industries including higher education, hospitality and tourism, financial services, entertainment and motorsports. She currently provides freelance/consulting services in writing, editing, marketing, social media and public relations on a part-time basis. Kristen and her husband, Douglas, moved to Charlotte in 2012 and welcomed their TSC Warrior Jackson to the world in 2019. Jackson was diagnosed with TSC when he started having seizures at seven weeks old. He underwent laser ablation brain surgery at 17 months. Kristen is a fierce advocate for Jackson and is committed to raising awareness, advocating and fundraising for a better future, services, research, and ultimately a cure, for him and others in the TSC community. Kristen enjoys working out, experimenting in the kitchen with healthy meals, being outdoors and spending time with her family, including their two dachshunds, Ranger and Roxy.

Step Forward to Cure TSC Walk Chair

Name: Kristen Moore
Email: kristen.robinson.moore@gmail.com

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.

Name: 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

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.

Dependent Adult Transition Resource Coordinator, North Carolina

Name: Kathleen Valenti
City, State: Waynesville, NC
Phone: (609) 870-6609
Email: khalpin2002@msn.com
Other volunteer positions held in addition to Dependent Adult Transition Resource Coordinator: None
Connection to TSC: Parent of an Adult

Find a Local TSC Clinic

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

Upcoming Events

Don’t Miss Any Updates!

Click here to join the mailing list for the TSC Alliance of North Carolina 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.