The TSC Alliance of Delaware/Lehigh Valley
Est. 2004
Click here for a description of our Community Alliance program.
The TSC Alliance of Delaware/Lehigh Valley 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: Liz Saadoun
City, State: Bala Cynwyd, PA
Phone: 610-517-2182
Email: fablizzy16@verizon.net
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: My daughter Maya was diagnosed with tuberous sclerosis in March 2000, at the age of 11 months. She was having infantile spasms. At the time there was very little information on the internet and Facebook did not yet exist, and we knew only one picture of TSC. My first real opportunity to connect with others was at the National Family Conference in San Diego in 2001. I met families from all over and started to learn about TSC and saw how it can affect individuals in so many different ways. It felt like a whole new world opened up. I joined the Community Alliance of Delaware/Lehigh Valley as a Co-Chair when it was organized in 2004 and have remained active ever since. With my family I have attended the National Family Conferences in Chicago in 2006, and most recently the World TSC Conference in Washington, DC in 2014. I also go to Washington, DC each winter to participate in the March on the Hill, where we advocate for continued research funding. I love organizing gatherings for my community where families and individuals can meet and support each other. I also love speaking with new families and helping them find their way in this journey we share.
Vice Chair
Name: Devon McCollum
City, State: Enola, PA
Phone: 253-561-1822
Email: devonmccollum@yahoo.com
Step Forward to Cure TSC Walk Chairs
Name: Jack and Fran Lyons
Email: jack.lyons12@comcast.net or flyons12@comcast.net
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 and Parent of an 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.
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 visit the TSC Clinic page.
Upcoming Events
Visit www.StepForwardtoCureTSC.org to find a walk nearest to you.
Don’t miss out on any updates!
Click here to join the mailing list for the TSC Alliance of Delaware/Lehigh Valley 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.