TS Alliance of North Carolina

EST. 2016

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.

Volunteer Leadership

Chair

Name: Karen Johnston
City, State: Raleigh, NC
Phone: 919-451-1842
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 Vice 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.

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

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

Join Us for an Educational Meeting
Saturday, October 21, Noon to 3 pm

Lunch will be provided.

Wake Forest Baptist Medical Center
 Piedmont One
Kitty Hawk Room
1920 West First Street Winston-Salem, NC 27104

Guest Speakers

  • Dr. Mary Silvia, Director, Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic
  • Dr. Matthew Wong, Co-Director, Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic
  • Karen Benson RN, BSN, BC, Pediatric Epilepsy Patient Navigator
  • Patricia A. Gibson, MSSW DHL ACSW, Director, Epilepsy Information Service
  • Gerri Smith, MPA, QP, Assistant Director of Advocacy and Chapter Services, The Arc of North Carolina
  • Cathy Brown-Hall, BS, ITFS: Early Intervention Service Coordinator for Durham Children’s Developmental Services Agency

Don’t miss this opportunity to hear from local experts with your TSC community! RSVP to Lindsey Miller at Lindsey.miller06@gmail.com or (814) 602-5635.


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 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.

 

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