TSC Alliance of Indiana
EST. 2003
Click here for a description of our Community Alliance program.
The TSC Alliance of Indiana 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: Laura Marlin
City, State: Greenwood, IN
Phone: 317-730-1746
Email: lmarlin@me.com
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: Hi, my name is Laura Marlin. I live in Greenwood, Indiana. I have been a TS mom for 3.5 years now. Our youngest son, Brody, was diagnosed when he was 5.5 months old after having Infantile Spasms. I felt like I was in a nightmare, and just needed to wake up. There is one thing that sticks out in my mind that my mother in-law said, “you’ll make new friends”. She was right about that! The TS Community is more than my friends now, they’re my family. The TSC Alliance has done a lot to help support us on this journey. There is not a cure yet, so they have been a wonderful resource for us. I encourage any newly diagnosed patients to pick up the phone and call. There is such a wealth of information each family can share. Connection is so important with a disease that can make you feel so scared and alone. I am here, anytime- day or night. Our “team” is Brody’s Believers, because we BELIEVE in our Brody. He is doing amazing! I have enjoyed being the chairwoman for the past few years, and I look forward to meeting you!
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
Name: Pat Schmutte
City, State: Indianapolis, IN
Phone: 317-413-1110
Email: pjschmutte@gmail.com
Other volunteer positions held in addition to Walk Chair:
Connection to TSC: I am a retired nurse and the grandmother of a beautiful young lady who has Tuberous Sclerosis Complex. Katie, my granddaughter, was diagnosed in 1998 at the age of 2 ½ months with TSC.
To offer Katie and all the other children and adults who live with TSC, hope for a better life and eventually a cure, I have volunteered in fundraising events… organizing two Gala/Silent Auctions and chairing the last 3 Walkathons.
Having witnessed positive outcomes of research activities and research studies directly as well as indirectly, I’m a strong advocate of fundraising events for TSC…raising funds for research while raising awareness of TSC and building relationships in our community.
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.
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 Indiana and be notified of all upcoming events. (*NEED TO MAKE SURE THAT WE HAVE A WAY TO ADD THESE PEOPLE TO CA QUERIES.)
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.