TAMPA, Fla. — Megan Self and her family are cutting ribbons, organizing signs, and doing all they can to get ready for this weekend's Step Forward to Cure TSC awareness walk.
“It’s the Step Forward to Cure walk, and it is to raise awareness for tuberous sclerosis complex (TSC). It's a disease that causes benign tumors to grow in one's major organs at any time," said Self.
Self has TSC. She was diagnosed at birth.
What You Need To Know
- The Step Forward to Cure TSC Walk Tamp pushes for tuberous sclerosis complex (TSC) awareness and funding. It's happening Saturday at MacFarlane Park in Tampa at 10 a.m.
- TSC is a genetic disorder where benign tumors grow in a person's major organs. Those tumors can cause seizures and even death
- Megan Self was born with TSC. She and her husband just found out their unborn daughter will have it too
- U.S. Congress passed a Continuing Resolution that included a 57% cut to the Congressionally Directed Medical Research Programs (CDMRP). This cut was not made uniformly across all CDMRPs, and resulted in no funding allocated to the TSC Research Program (TSCRP) for Fiscal Year (FY) 2025
“The reason why we walk is for those who are affected right now with TSC, those who are going to be affected with TSC," said Self.
The second part is even more true now, because Self is seven months pregnant.
“So, this is the nursery," she said as she walked into a room with pink walls, an array of pink and white clothes hanging in the closet, and with a white baby crib sitting up against the wall.
She is excited for her first child, but also carry an additional worry now.
“When I was 13 weeks pregnant, we did a procedure and it showed that Lennon does have TSC,” said Self of her daughter.
The tumors that TSC produces affect each person differently. But often times they can lead to seizures, and in some cases death.
“I think for me, it's hard because I can imagine her being like a teenager in the future and like maybe me having more kids and potentially them not having TSC and then her wondering why her and like why it happened," said Self.
Each year Self and her family go to Capitol Hill to push for more research funding.
But this year Congress passed a continuing resolution cutting Congressionally Directed Medical Research Programs (CDMRPs) by more than half.
CDMRPs are known for funding research aimed to improve health care for all.
The funding for the TSC Research Program came away with no funding for the fiscal year.
It makes this year's walk even more important to Self.
“Yeah, not having it for this year, it is a pretty big loss," said Self. “But you know, all we can do is move forward and and try for the next year to come and like and just continue to to try to get that funding that's so vital for us to have.”
The walk is happening Saturday, May 24, at 10 a.m. at MacFarlane Park in Tampa.
“I realized that like, I was put here for a reason to, like, do this and like, advocate. Like I said, for those who can’t,” she said.
Self hopes awareness will spread, and those who can will donate.
Even though the CDMRP funding was cut, Congress did add TSC to the Peer Reviewed Medical Research Program list. This allows research groups to apply for money through grants.
