TS Alliance of Kentucky/West Virginia

EST. 2015
Serves the states of Kentucky and West Virginia.

Click here for a description of our Community Alliance program.

The TS Alliance of Kentucky/West 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 those affected.

Volunteer Leadership

Co-Chair

Name: Tammy Kouns
City, State: Raceland, KY
Phone: 606-571-3882
Email: Tammyskouns@gmail.com
Other volunteer positions held in addition to Chair: Dependent Adult Transition Resource Coordinator
Short Bio and connection to TSC: My daughter Abby was diagnosed with TSC when she was seven months old.  She was diagnosed after we noticed the infantile spasms (not really knowing what those were at the time). Our local pediatrician ordered an EEG and a CT Scan, both of which came back abnormal.  We were then referred to CCHMC where we learned a lot about TSC over a three day admission.  At that time we discovered that Abby had brain, skin, kidney, and eye involvement. After Abby’s diagnosis I remained minimally involved. After participating in the 2013 “Where in the World is TSC” campaign,  I was promptly contacted by a local mom whom I am now very close friends with and we co-chair the Kentucky/West Virginia group.

The TS Alliance has not only provided me with support, but it has also opened the door to a network of friends that get it when no one else does. I call these people my TSC Silver Lining.  I see hope now.  I see a brighter future for my daughter.  When I look at how far we have come in just the 11 years that my daughter has been fighting, I am inspired.  I am very thankful to be a part of such a wonderful organization and fight for such a worthy cause.

Co-Chair

Name: Melissa Pennington
City, State: Ashland, KY
Phone: 740-961-1179
Email: melissabartley1@gmail.com
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: Parent

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

Tabitha ArnoldName: Tabitha Arnold
City, State: Barboursville, WV
Phone: 304-654-8563
Email: tabithaarnold@azzgalv.com
Other volunteer positions held in addition to Walk Chair: None
Connection to TSC: My son Tyler, now 13, was diagnosed with TSC at the age of 5.  At that time, we had no clue what TSC even was.  Though he has what is considered a mild case, we still battle seizures, developmental delays, learning disabilities and this condition on a daily basis.   Through Cincinnati Children’s, the TS Alliance and social media where friendships have been formed, we have developed an understanding and want to spread the word and help fight for a cure so that other families don’t have to struggle like we do now.

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 6

States served: KY, TN, MS, AL, GA, FL

alabama-mark-martinName: Mark Martin
City, State: Murfreesboro, TN
Phone: 860-794-9502
Email: markamartin2002@yahoo.com
Other volunteer positions held in addition to Adult Regional Coordinator: Clinic Ambassador
Connection to TSC: Adult with TSC, Parent of child with TSC

 

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: Parent and Adult

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, Kentucky

Tammy Kouns – See information above.

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 Kentucky/West Virginia 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.