TSC Alliance of Greater Kansas City
EST. 2006
Click here for a description of our Community Alliance program.
The TSC Alliance of Greater Kansas City 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: Amy Dublinske
City, State: Lees Summit, MO
Phone: 816-537-8854
Email: dublinske@sbcglobal.net
Other volunteer positions held in addition to Chair: TSC Alliance Board of Directors Government Relations Committee Member
Short Bio and connection to TSC: While pregnant with my first daughter a level two sonogram revealed that she had multiple tumors in her heart. A pediatric cardiologist indicated that she may have a “rare condition called Tuberous Sclerosis.” On 05/05/05 Kierstin was born and offically given the diagnosis of Tuberous Sclerosis Complex. Despite the devastation of the diagnosis we quickly became very active with the national TSC Alliance. We were so inspired and appreciative of this group which welcomed us with open arms into “the club.” After paving a path within our community we quickly founded the Community Alliance of Greater Kansas City and have been active for over a decade. I have been active within our community planning educational events, fundraisers and family support gatherings. I have also enjoyed participating in the goverment relations and the Annual March on Capitol Hill both locally and nationally. It is an honor and privilege to volunteer with the TSC Alliance!
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.
Fundraising Chair
Name: Laurisa Ballew
Email: laurisa.ballew@gmail.com
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.
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.
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 TSC Alliance of the Delta Region and be notified of all upcoming events.
You can also visit us on Facebook to receive the latest Community Alliance updates! (link to: )
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.