The TS Alliance of Delaware/Lehigh Valley

Est. 2004

Click here for a description of our Community Alliance program.

The TS 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 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
liz-saadoun-pa

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

shelly-meitzlerName: Shelly Meitzler
City, State: Wyomissing, PA
Phone: 610-568-8183
Email: momof2withTSC@gmail.com
Other volunteer positions held in addition to Vice Chair: Step Forward to Cure TSC Walk Chair
Connection to TSC: I’m a mother of 3 amazing children, 2/3 of my heart are affected with TSC, Ashlin, 14 years and Mason, 2 ½ years old. My middle daughter, Mikenna, 11 is not affected. I’ve been active with the TS Alliance for 12 years. I have held the position of walk chair and co-chair for the last 12 years, attended the March for TS research in DC beginning in 2006, and vice chair of our community alliance. I have watched as research has given new hope and insight over the last decade, and am determined to continue to advocate, educate and raise vital research dollars for a cure.

Step Forward to Cure TSC Walk Chair

Shelly Meitzler: see information above

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 5

States served: MI, IN, OH, PA, IL

brooke-simsaName: Brooke Simsa
City, State: Findlay, OH
Phone: 419-788-5626
Email: Brooke2330@gmail.com
Other volunteer positions held in addition to Adult Regional Coordinator: None
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: 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 TS 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.