PHILIPSBURG — It’s been almost six years since the story of Emily Whitehead stole the hearts of Progressland.
Whitehead, who was five years old at the time, was diagnosed with pediatric cancer on May 28, 2010. Her father Tom said doctors originally said it was the “garden variety type of leukemia.”
But it would be anything but the garden variety.
As Emily’s condition worsened in the next couple of years, doctors performed T-cell transplants in April 2012 to help save her life. At one point, she was given a 1-in-1,000 chance of survival.
Nearly four years later, Emily is cancer-free, thanks to the experimental procedure — becoming the first child in the world to have the T-cell therapy, which took place at the Children’s Hospital of Philadelphia. Because of her success in the battle against cancer, many more have benefited from the therapy. In order to raise awareness and to help others like Emily, the Whiteheads decided to form the Emily Whitehead Foundation in January 2015.
“We announced the foundation last January,” Tom mentioned. “We didn’t know it at the time. But within 48 hours of announcing it, we were invited to the White House.”
Tom said they were told that later in the week, President Barack Obama was going to announce the government was going to start funding precision medicine. In his State of the Union Address, Obama mentioned Emily as a success story when it came to precision medicine.
“We weren’t sure when to start (the foundation) or when to announce, but we figured it must have been meant to be,” Tom said.
Obama told the Whiteheads that funding for the procedures was one of the things that have bipartisan support.
After the White House trip, Tom said they reached out to local celebrity Jon Condo, the Philipsburg native who is an NFL long-snapper for the Oakland Raiders, to see if he’d be interested in helping spread the word of the foundation.
“It only took one message to Jon and he said ‘I’m all in.’” Tom said.
Last year, they held a golf tournament called “Teeing off for T-cells” at the Philipsburg Elks Lodge and Country Club to kick off the foundation’s fundraising efforts. Tom said they were hoping to make the first golf tournament a success by netting at least $25,000.
“We were told at the time that golf tournaments are a lot of work with a little bit of money, so that would be a pretty lofty goal,” Tom said. “So it was pretty amazing that we made over $40,000. That got us started.”
They started tackling other various fundraisers, including the Philadelphia Marathon.
“Dr. Carl June, who was in charge of the research that saved Emily in Philadelphia, said if Emily was coming down for the marathon, that he would run the full marathon for her,” Tom said. “He and his wife ran the full marathon for her.”
Overall, there were about 70 runners that took part, and the foundation raised $50,000.
There have also been numerous local donations, at which some of the large donors have wished to remain anonymous.
But just after the first year, the hard work has already paid off. On Jan. 5, the Whitehead family presented a check to Dr. Stephan Grupp of CHOP with a check for $100,000 to go towards T-cell research.
Tom said prior to the check presentation, he told Dr. Grupp that they would like to make a donation. At that time, Tom only gave him an estimate of about $50,000.
“We didn’t want him to know how much we raised, and we wanted it to be a surprise,” Tom mentioned.
Dr. Grupp told Tom the biggest need they have at CHOP currently is growing the T-cells.
“They have to pay to grow the T-cells because, so far, insurances aren’t covering that part of it yet,” Tom said. “So they’re still working with it and it’s still experimental. The goal is to try to take it to the FDA (Food and Drug Administration) for approval in the next year. So we made the donation to his lab.”
The procedure that saved Emily’s life included having her T-cells reprogrammed by actually using HIV, where those T-cells would then fight the cancer cells. Had the experiment not worked, Tom said the whole experimental procedure would have been officially scrapped.
“At CHOP, they’ve treated at least 59 kids, with 93 percent getting into a full remission,” Tom stated. “These are all kids who would have died (without treatment). So we wanted to help some of those kids because Emily lost a lot of friends while she was at the hospital. That’s the reason why she wanted to help and make a difference.”
Once Emily got better in 2012, they kept a bit of a low profile. But later that year, Emily was the cover story on the New York Times. After that, numerous national media outlets contacted them about her story.
“When they put her picture on the cover of the New York Times, it changed our lives the next day,” Tom said. “By the next day, we were getting media calls from all over the world.”
With that world platform, it has greatly helped in terms of getting the foundation up and running. While her story has now been told all over the world, they still receive plenty of local help.
Just recently, the Clearfield and Philipsburg-Osceola wrestling teams held a fundraiser with the help of the Philipsburg-Osceola elementary schools. The fundraiser raised more than $20,000 and was donated to the foundation. Emily has also taken part of Penn State’s annual THON benefit.
Those interested in donating, volunteering, or fundraising can visit www.emilywhiteheadfoundation. for more information.