The Emily Whitehead Foundation has been at the center of the biotech community this week in Philadelphia, with two impactful events supporting their mission to help families, children, and researchers activate the cure for childhood cancer and access new CART-T therapies.
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The Emily Whitehead Foundation has been at the center of the biotech community this week in Philadelphia, with two impactful events supporting their mission to help families, children and researchers activate the cure for childhood cancer and access new CAR-T therapies.
The Center for Breakthrough Medicines held its third annual Partnership for Patients event yesterday at their headquarters in King of Prussia, while the Foundation’s Dreamcatching: Awaking in the world of transformative therapies event in Philadelphia tonight brings together world-renowned scientists, physicians, members of the philanthropic community, as well as as other policymakers.
Both events celebrate the journey of Emily Whitehead, now 11 years cancer free, thanks to the technology that ultimately saved her, CAR-T cell therapy.
“We’re just so pleased to be partnered with the Emily Whitehead Foundation and to find ways to fund and ultimately support the families before, during, and after the treatment process,” said Audrey Greenberg, Co-Founder and Chief Business Officer, Center for Breakthrough Medicines.
“There’s something very unique about cell and gene therapy and the connection to the patient,” says George Eastwood, Interim Executive Director and Board Chair, Emily Whitehead Foundation. “I’ve been asked ‘Why is there no gene therapy Emily?’ ‘Why did no other drug modality have a face of this pillar of medicine that we are forming?’ Part of it is, there’s a piece of Emily that left Emily that went and was manufactured and came back. And the way in which the story is told, there’s just a more personal and really unique connection and its motivating.”
But beyond that, bringing it back to Philadelphia, and celebrating the innovators working tirelessly behind the scenes to make these cures possible, is one of the most inspiring parts.
“Partnering with The Center for Breakthrough Medicines, soon-to-be SK pharmteco, and bringing a voice to the thousands of people that will work here, is incredible. They’re gowned up in a clean room for 14 hours. And bringing Emily’s story as a representative of what we’re doing really resonates,” says Eastwood. “The next Emily, her cells are in there growing right now. There’s something very unique and different and very special that I still can’t quite articulate.”
Emily, and the Foundation’s, Next Chapter
And while this alone has been enough to celebrate, Emily is ready to focus on the next chapter: being cured.
In her own words via Instagram this May: “I am so grateful for everything I have gotten to experience these last eleven years. While this will be the last official cancer free pic, it certainly won’t be the end of me making the most of my life without cancer. It’s time for me to move on to bigger things and figure out what I want to do in the absence of cancer while continuing to advocate for patients just like me. We are all humans after all — not just cancer survivors. I’m so excited to figure out the rest of my life!”
The Foundation is supporting.
“For the last year we’ve really thought about what the Foundation does next and how we continue along the path now that Emily is eleven years cancer-free and cured,” says Eastwood. “It was a dream that it would happen and now it has. But what do we do next? How do we enable access to more patients? How do you support those patients along the journey? Trying to define that better and see where the gaps are in pharma for it. It’s a pivotal point for us.”
Building out their Board was one answer. Their heavy hitting lineup now includes J. Kelly Ganjei, President & CEO, Amplify Bio, Dmitri Siegel, Director, State Government Affairs, Alliance Development, Bristol Myers Squibb, Darshan Kulkarni, Regulatory and Compliance Attorney for the Life Sciences, The Kulkarni Law Firm, Robert Madonna, Managing Partner, Diversified Services, and Christopher Stott, SVP, Enterprise Director of Private Banking, CNB Bank.
And their continued focus on grants is another. Funding is where the Foundation hopes to continue to grow.
“Emily was pretty adamant that she wanted to try to help these patients get more help, even psychologically, after treatment, because not everybody’s better when their cancer is gone,” says Tom Whitehead, Emily’s dad. “We looked at Dr. Schofield and thought we’d like to fund her research to see what changes in your brain, too, after this treatment.”
Hannah-Lise Tirado Schofield, PhD, is a neuropsychologist in the Department of Child and Adolescent Psychiatry and Behavioral Sciences and the Cancer Center at the Children’s Hospital of Philadelphia (CHOP). Dr. Schofield’s research focuses on neurocognitive outcomes of oncology treatment. Her areas of interest are acute and long-term neurotoxicity and cognitive sequelae of cellular therapy and transplant. She is the primary investigator (PI) on two funded studies of cognitive functioning after hematopoietic stem cell transplant (HSCT) and chimeric antigen receptor (CAR) T-cell therapy.
“Our main focus now is pairing up the patients with these treatments because there are so many new breakthroughs since Emily; there are so many new ways to fight cancer. Yet less than 10% of patients who qualify or would qualify for these treatments are getting them. So it’s heartbreaking to us,” says Whitehead referring to his wife, Kari. “It’s come a long way, but there’s still a long way to go to get them to these treatments.”
His hope, and the hope of Eastwood and the Board, is to continue to tell Emily’s story within mainstream media.
Emily’s treatment gained worldwide attention, and her story has been featured in The New York Times and Ken Burns’ PBS documentary Cancer: The Emperor of All Maladies. A 3-minute documentary about her treatment, called Fire with Fire, was created by Oscar-winning director Ross Kauffman. Recently, the Whitehead’s published a book about their journey called Praying for Emily: The Faith, Science, and Miracles that Saved Our Daughter. A full-length documentary, called Of Medicine and Miracles, premiered at the 2022 Tribeca Film Festival.
You can expect an IMAX to launch in 2024 and the Foundation is in talks with streaming services for a documentary.
What’s Next In Cell and Gene Therapy?
John Lee, PhD, SVP of Cell Therapy Manufacturing, an accomplished CAR-T immunobiologist with over 20 years of cancer cell biology expertise spanning small and large molecules, as well as cell-based therapeutics, furthered these sentiments.
“This is the future of medicine,” said Dr. Lee. “Cells can do anything you program them to do. It’s like a mini factory. And we’re just scratching the surface of what that looks like.”
As for the Foundation…
“We’re bringing our Believe Ball back to Philadelphia, as well as defining those patient support programs and building out a strategic plan and business plan for the future to create scalable ways to help more patients,” says Eastwood.
