TS Alliance of South Carolina

EST. 2008 as TS Alliance of the Carolina, name change in 2016.

Click here for a description of our Community Alliance program.

The TS Alliance of South 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

jeff-davisName: Jeff Davis
City, State: Columbia, SC
Phone: 803-351-6639
Email: zzdavisl@yahoo.com
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: My son, Law, was diagnosed with TSC at 4 months old.  He is severely affected.  His seizures have generally been uncontrolled notwithstanding resectioning surgery and multiple medication changes.  My wife and I have found comfort in the TS community.  We have hosted a number of gatherings and have enjoyed meeting the South Carolina’s Congressional delegation to help secure funding for TSC research.

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: Amy Bredeson
City, State: Bluffton, SC
Phone: (843) 290-2741
Email: acbredeson@yahoo.com
Other volunteer positions held in addition to Walk Chair: None
Connection to TSC: Amy Bredeson is a wife, mother of two and freelance journalist in South Carolina. She enjoys spending time with her family and friends, and raising awareness of tuberous sclerosis complex. Her daughter, Chloe, was diagnosed with the disease after she started having seizures just before her 4th birthday. Chloe also has polycystic kidney disease but is doing very well at age 10. Amy has a passion for learning about and teaching others about TSC, as well as raising money for the Tuberous Sclerosis Alliance through the Step Forward to Cure TSC walk in South Carolina.

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 and Parent

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 South 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.