Step Forward to Cure TSC Has Carmel Connection

Carter was diagnosed with TSC at one day old.

The TS Alliance is making great strides to find a cure for this unknown to many, yet relatively common disease. TSC (Tuberous Sclerosis Complex, commonly called TS) is a genetic disorder that affects one out of every 6,000 live births each year. It is more prevalent than Cystic Fibrosis or Lou Gehrig’s Disease. The TS Alliance of Indiana hosts the Step Forward to Cure Tuberous Sclerosis walk to raise awareness and funds to help research efforts to find a cure. “This is just one way we can help out,” says Susan Campbell, Carmel resident and Chairperson for the TS Alliance in Indiana. “It is a fun family day, as well as a great way to raise money for our cause.”

Brent, Mindi, Brady and Carter Schmidt.

Campbell is no stranger to the disease. Her son, Matthew who is now seven, was born 10 weeks early because of tumors in his heart. TS causes non-cancerous tumors to form in major organs, such as the brain, lungs, kidneys, skin, liver and eyes. TS has a wide spectrum of severity from needing total care to going completely unnoticed (depending on where the tumors are located in the organs). In Matthew’s case, he suffered many complications of TS at birth. Though the cardiac tumors have diminished, multiple tumors have developed in Matthew’s brain, causing seizures, developmental delays, and autism. Fortunately, though, Matthew goes to school every day and is a student in the Life Skills Program. “He is our miracle child,” Campbell explains. “We had never heard of TS before Matthew was born. He’s been through so much, but he’s still such a happy boy.” Campbell went on to say that the TS Alliance, the only venue for housing comprehensive TS support and facilitation of research, had provided them with many tools needed to educate themselves, as well as their family and friends.

“Since 2002, the medical and scientific communities for TS have come leaps and bounds.” They were able to identify the two genes directly linked to TS, discovered what those genes do in the body, and have launched clinical trials that have lead to the discovery of a protein pathway responsible for the symptoms of TS. “We are steps away from finding a cure,” says Campbell. “It is just amazing they have come so far, so fast.”

One big step the TS Alliance of Indiana takes is the annual walk, which raised over $50,000 last year from personal and business donations and a silent auction conducted at the walk. “We are a small, but mighty group,” says Mindi Schmidt, a Fishers mom of a son with TS who helps organize the walk. “Last year we pulled all our resources together and made a successful event.”

Last year the TS walk raised over $50,000! The walk is May 1st at Forest Park in Nobleville and is very family friendly.

This year the walk is May 1st at Forest Park in Noblesville. Registration is at 11a.m. and the walk will begin at noon followed by lunch for all participants. Bub’s Burgers, a Carmel favorite, will be providing the tasty lunch. There will be a kid’s corner with appearances by Mickey Mouse and Elmo! The fun will continue with games, prizes, face painting, balloon clown, magician and a live concert by Ruditooz. “The walk is just under two miles and is very family friendly,” explains Schmidt. “We will either have a silent auction again, or hold a raffle. However, our main fundraising is done through online donations by family/friends at our site www.StepForwardtoCureTSC.org, through various sponsorship opportunities at the walk, or by donations collected by volunteers who ‘cold-call’ on businesses.”

At the other end of the TS spectrum, there’s Carter, Schmidt’s son who is now three and has mild symptoms of TS. He was diagnosed at one day old. “We, too, had never heard of the disease,” Schmidt said. “Over the past few years, we have discovered Carter has tumors in his brain, heart, kidneys, eyes and skin.” As of now, he only battles mildly delayed speech and is being treated for seizures. Schmidt continues to say that Carter is doing really well at this point. “The real saving grace for us is having a great support group like the TS Alliance of Indiana. We are very lucky.”

“It takes a community effort to make things happen,” Campbell says about being a part of the TS Alliance. “It’s definitely a group effort.” To help volunteer for the walk, contact Susan Campbell at sucampbe@gmail.com. If you are interested in walking go to www.StepForwardtoCureTSC.org to register. More information about TS can be found at www.tsalliance.org.