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Condo helps young girl fight cancer

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Outside of the town of Philipsburg, Emily Whitehead and Jon Condo are not household names.

On the surface, Whitehead is a normal 12-year-old girl who enjoys playing Minecraft and gets a little restless during long meetings.

Condo is a veteran of many seasons in the National Football League, but he plays one of the least appreciated positions in the game — long snapper.

But together, along with the rest of the Whitehead family and several of Condo’s friends from the gridiron, Emily and Jon are making a difference that will be felt worldwide.

In 2010 when Emily was just 5 years old, she was diagnosed with cancer at the Hershey Medical Center. She was diagnosed with an 85 to 90 percent chance of recovery but relapsed while still in chemotherapy.

A bone marrow transplant was scheduled, but Emily’s condition worsened to the point that doctors advised Whitehead’s parents, Tom and Kari, to take her home and put her into hospice care and enjoy the final days they had left with her.

Determined not to lose their daughter, the Whiteheads instead signed Emily up for an experimental T-cell trial which would become known as Novartis’ CAR-T therapy.

The treatment begins with filtering immune cells known as T-cells from a patient’s blood. From there, a gene is inserted into the cells that makes them grow a receptor that targets blood cancer cells. Millions of the new T-cells are grown in the lab and then put back into the patient’s blood where they can fight cancer.

Emily’s success story was the first of many with the new treatment, and the Whiteheads decided to form a foundation to spread the word about the Novartis therapy and help others in need.

That’s when Condo came into the picture.

The Oakland Raiders’ long snapper was familiar with the Whiteheads because their families had grown up together. Condo had been hoping to put together a golf tournament to support a charity and came up with the idea and presented it to Tom Whitehead.

For the past three years, Condo has attracted several NFL players and All-American wrestler Kerry McCoy to take part in the golf outing which is held at the Philipsburg Elks Country Club.

Golfers can bid to play with the celebrities, and Condo brings along with him several big-ticket items of sports memorabilia and vacation packages which are auctioned off.

“He’s the key,” Tom Whitehead said regarding Condo. “When he agreed to partner with us, the tournament has become one of the most successful outings in the area because of him. He works hard to keep that up.”

The tournament, held last Friday, made $58,000 this year and has made about $170,000 in three years.

Condo’s wife is expecting the couple’s third child any day now, but with her blessing, Jon still made the trip to participate this year.

Most of the money raised goes toward helping children with the costs of the Novartis treatment, but a small amount goes toward trips like the one the Whiteheads made to Silver Springs, Md. to meet with the Food and Drug Administration recently.

Tom Whitehead, along with the family of another child the Whiteheads helped save, spoke just before the FDA panel voted 10-0 to recommend the Novartis treatment be approved.

“I was the last speaker before the vote,” Tom Whitehead said. “It was an amazing experience. Emily walked up at the end, and I said if you want to see what this treatment can do, she’s standing right next to me.

“The whole room started clapping, and I was so proud she was willing to stand up there. I told her that (the FDA) just seeing her will mean more than any words I can say.”

The FDA is expected to make its final approval within the next few months. If it is accepted, the CAR-T therapy will be available at 37 hospitals and a lot more kids will have the opportunity to get the treatment.

FDA approval will also mean doctors will become much more educated on that option, and parents will be presented with a choice between the Novartis treatment and a bone marrow transplant.

Tom Whitehead stresses that the more kids they can get into the trial will help the treatment become more effective.

“This is working at a high rate for these kids,” Tom Whitehead said. “But even if you are at a 90 percent success rate, if you know all 100 families, the 10 you lose is very tough. Our goal and our foundation’s goal is to have the same outcome we did with every family.

“This is the first time a cell therapy has been recommended to be passed by the FDA, so we’re really making progress.”

The Whiteheads appeared on Fox News this week, and Emily did a feature with NBC. Their story is spreading, and they hope the treatment that saved Emily will continue to save several others.

“It makes us even more proud of Emily that she’s become the face of the revolution,” Tom Whitehead said. “We do national media, and we meet parents of sick family members who we have directly impacted. The more we are getting out there, the more we are saving people and raising awareness.”

That’s a pretty amazing accomplishment from a 12-year-old girl, her family and a long snapper from Philipsburg.

Michael Boytim can be reached at 946-7521 or mboytim@altoonamirror.com

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