How one little boy’s story led to the Institute for Pediatric Rare Disease at Florida State


Florida Representative Adam Anderson spearheaded a $1 million grant to FSU to establish the Institute for Pediatric Disease. Anderson says his motivation came from losing his son, Drew, in 2019 to Tay-Sachs Disease, a disorder that affected just 16 other children in the United States at the time. Watch now to hear Rep. Anderson talk through his motivations and what institute hopes to achieve in its future.

BROADCAST TRANSCRIPT:

The beginning of a long-term impact on families around the world.

I’m Alberto Camargo in the College Town neighborhood.

A new research program at Florida State University is looking for treatments and cures for diseases that not many understand, and is often fatal.

And how it started from the motivation of a father who was left with a million questions, and even more grief.

From one of the darkest moments of a parent’s life…

“When you go through that kind of life-changing event, you re-evaluate a lot of things in your life.”

Came a light at the end of the tunnel for families like his.

Representative Adam Anderson is a father of two daughters, and one little boy, Drew.

“He was a very happy little boy. Always smiling… But once Tay-Sachs started affecting him it was a challenging life.”

Tay-Sachs disease, a rare genetic disorder that attacks the brain and causes loss of muscle control.

Drew died in 2019. He was four years old.

Anderson says at the time of his diagnosis, only 16 other kids suffered from Tay Sachs.

One of several thousand rare diseases that affect children around the globe.

“It’s not only become a passion of mine. It’s become the purpose for me being here in Tallahassee.”

Earlier this month, Anderson announced a one million dollar grant to Florida State University to establish the Institute for Pediatric Rare Diseases, led by Dr. Pradeep Bhide.

He says the institute’s long-term goals include a pediatric health center at FSU, a genetic screening center and a Master’s program in genetic counseling.

But most of all, research.

“Research that can discover novel treatments that are not going to be that expensive.”

Treatments and cures are ideal.

But Bhide says there are over 7000 rare diseases that affect millions.

Few have cures, but finding out early can make for an easier life.

“Pediatric disorders continue throughout life. So diagnosis early is critically important.”

For Drew Anderson and most who live with a rare disease, a cure never came.

It’s a grief that will always stay with his dad.

“I imagine, as a father, it’s hard to go a day without thinking about Drew.”

“Doesn’t happen… doesn’t happen.”

But from his grief, Anderson has found his reason.

“The impact that that little boy had on our community, our family. The impact he’s having now on the state of Florida and beyond, it will continue.”

Anderson says that he is working to secure second round of funding for the institute, to make sure Drew’s impact will go on.

In College Town, Alberto Camargo, ABC27.

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