TSC Alliance of the Dallas/Ft. Worth Area
Est. 2001
Click here for a description of our Community Alliance program.
The TSC Alliance of Dallas/Fort Worth 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: Leslie Russell
City, State: Coppell, TX
Phone: (972) 658-8872
Email: leslie.russell2@verizon.net
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: I am the mother of two beautiful daughters Carlie, age 20 and Anna, age 19. Anna was diagnosed with TSC at 8 months in June of 1998 after a misdiagnosis at birth. My husband and I quickly reached out to the NTSA back then and although it was much smaller than today’s TSC Alliance, the goals remained the same. We were connected to another family with TSC and soon relocated to Dallas for care at Texas Scottish Rite Hospital for Children, one of the first comprehensive TSC clinics at the time.
My involvement has been on and off over the years due to the highs and lows of the disease, however I now realize that my involvement with the TSC Alliance has empowered me to make a difference not only for my daughter, but for others dealing with TSC as well. I am stronger through connecting with others and utilizing the many resources of the TSC Alliance. I have truly enjoyed participating in the “March on the Hill” in D.C. and meeting our elected officials to educate them about the importance of continued research and funding for TSC.
Dealing with the daily struggles with TSC over the last two decades has given me a unique perspective on how far we have come with advances in treatment and support. I hope that sharing my experiences and perspective will help others dealing with TSC.
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
This position is currently open. If you are interested in the Walk Chair position, please click here for a position description and/or to apply.
Step Forward to Cure TSC Walk Committee Member
Name: Tricia Bodnar
City, State: Dallas, TX
Phone: 972-931-9946
Email: triciachildren@att.net
Connection to TSC: I have a 40-year-old son, Kevin, who was diagnosed with TSC at the age of two. Once we moved to Dallas in 1981, I became very involved with the TSC Alliance. At that time, I was an area representative for a number of years and worked very closely with the TSC families in the area. We held seminars, picnics, had Christmas Parties, which we still do. I helped with the walk for 12 years and have been co-chairing for the last several years. I have been the Clinic Ambassador at Scottish Rite Hospital For Children for 3 years. I am always available to support anyone who needs help including our adults with TS, as we have no adult clinic.
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
Name: 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.
Dependent Adult Transition Resource Coordinator, Texas
Name: Laura Buckner
City, State: Longview, TX
Phone: 512-232-0741
Email: laura.buckner@utexas.edu
Connection to TSC: Parent of an Adult
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 Out on Any Updates!
Click here to join the mailing list for the TSC Alliance of Dallas/Fort Worth 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.