TS Alliance of Greater Chicago

EST. 2002

Click here for a description of our Community Alliance program.

The TS Alliance of Greater Chicago 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

Name: Geri Greenberg
City, State: Northbrook, IL
Phone: (847) 272-7747
Email: tscgreaterchicago@icloud.com
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: Shortly after I learned our grandson was born with TS, including epilepsy and cardiac issues, I became a volunteer for TS Alliance. An amazing organization with which to be affiliated, their passion to make a difference is contagious!  I have been a local walk chair and continue to be Community Alliance Chair.  I have been fortunate enough to participate in a most empowering experience, March on the Hill, the Alliance’s government outreach program. I love connecting with people, particularly linking those with common experiences–as it seems to make an incredible difference in people’s lives, both mine and theirs.

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, Libertyville

Scott BrownName: Scott M. Brown
City, State: Vernon Hills, IL
Phone: (847) 894-1995
Email: Smbrown62@yahoo.com
Other volunteer positions held in addition to Walk Chair: None
Connection to TSC: I work in Operations Finance but my true passion is helping others. I first learned about TSC when my son Derrick was born with it. Our family was thrust into a life of constant doctor visits, hospital stays, therapies, and ongoing worry about what is coming next. However, Derrick continues to amaze us with his strength and resiliency.

Derrick is with us today because of the hard work and dedication of those who championed for the disease before us. Now it’s our turn to join the search for a cure for both Derrick and the future miracles affected by TSC.

Step Forward to Cure TSC Walk Chair, Galesburg

Karen Johnson WengerName: Karen Johnson-Wenger
City, State: Gilson, IL
Phone: (309) 338-5610
Email: Jkarjo@yahoo.com
Other volunteer positions held in addition to Walk Chair: None
Connection to TSC: My daughter, Addie, was diagnosed with TSC at the age of 6 months after having Infantile Spasms for 4 months.  I am the step-mother to 2 other children, Samantha age 23 and Jesse age 19.  I chair the Step Forward to Cure TSC Walkathon in Galesburg, Illinois and also attend the March on the Hill in Washington DC.   I have been on the parent board for Infantile Spasm and also am an Ambassador for Sabril.  I am a Licensed Clinical Social Worker and work full-time as a Medical Social Worker in Hospice and own a home based business.  I enjoy spending time with my family camping, horseback and mule riding.

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-simsa-oh

Name: Brooke Simsa
City, State: Findlay, OH
Phone: (917) 324-6708
Email: brooke2330@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 Greater Chicago 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.