Philipsburg’s Emily Whitehead is helping change cancer treatment for the better. Here’s how to help
Philipsburg’s Tom and Kari Whitehead find it difficult to put the phone down these days.
As founders of the cancer-fighting Emily Whitehead Foundation, named after their 16-year-old daughter who’s been cancer-free for nine years, they often field calls from desperate parents who don’t know where else to turn. Between the Whiteheads’ full-time jobs in Centre County and their charity work, it’s not unusual to put in 16-hour days while granting interviews about Emily’s innovative T-cell treatment and speaking with families in need of hope.
But the Whiteheads still wouldn’t have it any other way.
“When you get a message from a family that says, ‘Because you took my call, it saved my child’s life’ — that makes it all worth it,” Tom said.
To reach even more families, the Whiteheads are gearing up to host one of their year’s biggest fundraisers in their 7th Annual “Tee Off for T-Cells” Golf Tournament at the Philipsburg Elks Lodge & Country Club, which kicks off Friday. The last tee time sold out earlier this week, but community members can still donate online or even bid in-person at the tournament’s silent auction with items such as World Series tickets, golf excursions, and more.
It’s an important event that affords the foundation the ability to advocate, fund research, offer grants and talk to those families — all while sharing Emily’s unique story, one that has been featured in the New York Times, CNN, Fox News and The New Yorker.
“Her story is inspirational, I tell people that all time,” said Philipsburg’s Jon Condo, a retired 14-year NFL veteran who helped start the golf tournament seven years ago. “It’s just a tremendous feeling, coming from a small town, to see the way they back people and support them.”
Emily’s story & unique treatment
Eleven years ago, the smiling 5-year-old girl who often posed with her tiny Pomapoo dog was diagnosed with acute lymphoblastic leukemia, a type of cancer in the blood and bone marrow that affects white blood cells.
Emily relapsed twice, before the cancer became resistant to her treatment options. Her parents were told she would likely live for only a few more weeks. They needed to prepare themselves.
But the Whiteheads refused to accept that fate.
They found an experimental treatment, called CAR T-cell therapy, available at the Children’s Hospital of Philadelphia. They enrolled her in a clinical trial just before her 7th birthday, one that essentially collected her T-cells (a type of white blood cell), modified them to fight cancer and then returned them. Emily was the first child — and one of the first people, period — to ever receive the treatment.
The Whiteheads had a rule back then: Smile every day. Even during the darkest times, Tom would blow up a latex glove like a balloon to make Emily laugh. Sometimes, he’d offer a piggy-back ride.
But, in time, smiling became a lot easier. The experimental treatment was a success. Less than a month after she started treatment, she was in complete remission.
The New Yorker wrote that Emily’s “startling recovery ... probably saved the field of CAR-T therapy, and helped energize cell therapy in general.” Emily’s “experimental” therapy was approved by the Food and Drug Administration in 2017. Since then, four other similar treatments for other cancers have also been approved, with others in clinical trials.
“Emily’s story has been incredibly impactful in CAR-T research and the field of immunotherapy in general,” said Amanda Hunt, the foundation’s communications director. “Had her treatment not been a success, there could’ve been a lot of delays with that treatment getting approved. It really made a huge difference.”
Emily is 16 years old now and stands at 5-foot-10. The girl who was once told she had no future now wants to be a filmmaker. She enrolled in PA Cyber School last year during the pandemic and finished with a 4.0 GPA; her father said she plans to do the same this year as a junior but might finish her senior year at Philipsburg-Osceola High School.
She still smiles every day.
How the foundation is helping
As the years have passed and more have heard Emily’s story, the need for the foundation has only increased.
Tom and Kari used to take one or two calls a month from families; now, it’s more like 1-2 a week. They’ve created a private Facebook group with more than 325 families going through CAR T-cell Therapy. They’ve connected families with other organizations like Angel Flight, a nonprofit that provides free transportation for those in need of medical treatment. They recently helped establish a $50,000 grant for young researchers. And they provide emotional and financial support — something they hope to greatly expand — to those who ask.
But maybe the most rewarding part, Tom said, is when they hear about another success story.
A family from India reached out to the Emily Whitehead Foundation late last year, with the foundation helping them secure the necessary travel documents and trial spot for their 6-year-old son, Chinmay.
Tom found out several weeks ago that Chinmay is finally in remission. Chinmay’s father, Rajul Gupta, an orthopedic surgeon, wrote on the Whiteheads’ website, “We always have the feeling that as long as we are in the USA, we have a strong backup in (the) form of the Emily Whitehead Foundation.”
The Whiteheads have traveled around the world in a bid to increase awareness about the treatment, encouraging other countries like Germany to start similar programs. They’ve visited Paris, stopped in Switzerland (twice) and even had a film crew follow them around in Germany.
The Whitehead family released a book last fall with a foreword written by famous filmmaker Ken Burns, titled “Praying for Emily: The Faith, Science, and Miracles that Saved Our Daughter.” There’s also a documentary in the works that could hit the Sundance Film Festival next year, led by acclaimed documentarian Ross Kauffman, who won the 2005 Oscar and Emmy for best documentary. (A screening might even be coming to Philipsburg.)
Emily Whitehead’s treatment helped take cancer treatment, in general, to a new level. Her story’s provided hope to those who were once hopeless. Tom said countless researchers have also thanked him for sharing Emily’s story — so they can put a face on all the work they’re doing.
“Parents would give anything to have another day with their child, so that’s what motivates me every day,” Tom said. “To try to make a difference, to help other families have the same outcome as us and let the world know about these new treatments. ... We want to move that forward because we know how blessed our family is.”
How you can help
Taking part in Friday’s annual golf tournament is one way to help the Emily Whitehead Foundation — but it’s not the only way.
Those interested can also make a tax-deductible donation at emilywhiteheadfoundation.org/donate via either credit card or PayPal. (Checks can also be sent to the foundation at 441 S. Centre St., Philipsburg, PA 16866.) You can also sign up to volunteer or help plan September’s “Believe Ball” for patients, survivors, families and researchers.
There will also be a silent auction at Friday’s golf tournament, open to the public from 9 a.m. to 7 p.m. All items were donated so, outside of a small percentage that goes to a third-party vendor, the money raised goes right to the foundation. Some of the items include World Series tickets, a Cancun vacation, at least two weekend golf trips, sports memorabilia, and more.
You can bid in-person at the Elks Lodge, even if you’re not part of the golf tournament.
To date, the golf tournaments alone have raised more than $300,000 since the first one in 2015.
“To see that 5-year-old girl be able to continue through the years and be happy, that’s how kids should be able to live life,” Condo said. “For her to be able to do that, it just lets us know we’re doing the right thing.”
Added Hunt: “Every little bit helps.”
