TS Alliance of Oklahoma

EST. 2014

Click here for a description of our Community Alliance program.

The TS Alliance of Oklahoma 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

April BennettName: April Bennett
City, State: Bartlesville, OK
Phone: 918-397-7433
Email: livingwithtsc@gmail.com
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: My son’s diagnosis of TSC started my transformation from an introverted Geek-Girl to a confident mother and influential advocate. Once that switched was flipped there was no looking back. First came Partners in Policy making sponsored by the Oklahoma Developmental Disabilities Council (ODDC) then Partners in Education Advocacy which was sponsored by the Oklahoma Disability Law Center (ODLC). Graduating from these courses was a spring board for me to initiate the Civitan Community Accessible Park project. This park demonstrates to the entire city the true meaning of accessibility. As a special education advocate I toured the eastern half of the state being a voice for parents of children with disabilities. When hearing my name, school districts quaked with fear.

Extreme passion to change the world for my son opened up opportunities allowing me to impact lives, not only in Oklahoma, but around the world. In 1996, Ethan’s TS website was the first one of its kind sharing a family’s story. When I receiving an email from Ecuador it signified a new world through technology. I never want anyone to feel alone in this journey. Today, through social media technology connects TS families around the globe 24/7. Deep down, that introverted Geek-Girl in me gets excited seeing how technology helps our children communicate and learn. I am passionate about helping parents advocate for their precious children with TSC. Using facetime and conference calling, I am only a phone call away. Do you remember, “Look, up in the sky, it’s a bird, it’s a plane, it’s a frog. A frog?” “Not bird, nor plane, nor even frog, it’s just little ‘ole me, Advocate April here to fight for the underdog!”

Co-Chair

Name: Heather Lens
City, State: Stilwell, OK
Phone: (941) 416-2250
Email: heather.lens@gmail.com
Other volunteer positions held in addition to Chair: Special Events Chair
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.

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 4

States served: KS, MO, OK, AR, LA, TX

Jake IrbyName: Jake Irby
City, State: Austin, TX
Phone: Home: (512) 249-7337
Cell: (512) 586-8895
Email: irby.jake@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.

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 Oklahoma 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.