TS Alliance of North Carolina
Click here for a description of our Community Alliance program.
The TS 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 TS Alliance in their local state(s) or region by dedicating themselves to finding a cure for TSC and improving the lives of those affected.
Name: Karen Johnston
City, State: Raleigh, NC
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 TS Alliance of North Carolina to raise awareness and help to build outreach programs to provide support for families affected by TSC.
Step Forward to Cure TSC Walk Chair
Name: Heather Morris
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
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
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.
Don’t Miss Any Updates!
Click here to join the mailing list for the TS 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.