Emily Whitehead Foundation

It has been eight years since we first launched the Emily Whitehead Foundation! As the foundation continues to grow, our mission to help families #ActivateTheCure remains central to everything we do. Today, we are thrilled to release a new video that captures the commitment of our team, our board of directors, our dedicated volunteers, and our family to fulfill that quest. ?? Tell Us GmbH (Marwin Gansauge) Tom Whitehead Kari Whitehead George Eastwood Amanda Hunt Jodie Potter Jon Condo Tom Smith Tom Garrett #EmilyWhiteheadFoundation #cartcelltherapy #patientadvocacy #childhoodcancer #immunotherapy #patientstories #cellandgenetherapy #nonprofit #cancerresearch #writeabetterstory

The Emily Whitehead Foundation celebrated National Rare Disease Day on Friday, February 28, by standing with Victoria Gray, the first sickle cell patient treated with CRISPR gene therapy, at Massachusetts General Hospital. Victoria, alongside Dr. Sharl Azar, hematologist at the Massachusetts General Hospital and Harvard Medical School, toured the Sickle Cell Disease Treatment Center, delivered Believe Bundle care packages to patients and families, and shared her inspiring journey with two patients preparing to receive the same life-changing gene therapy that she received. The Foundation is committed to building connections, amplifying patient voices and advocating for greater access to advanced therapies for all who can benefit from them!

“I stand up for science because science saved my life.” ? That was Emily Whitehead’s message in the nation’s capital yesterday, as she joined thousands of scientists, researchers, doctors, patients and supporters at the Stand Up for Science rally to give voice to every patient and family who counts on federal funding to develop life-saving treatments.? ? After giving a speech against the backdrop of the Lincoln Memorial, Emily along with her father Tom Whitehead were then live on CNN’s The Lead with Jake Tapper to share their family’s personal story about the incredible impact of scientific and medical research. Emily’s message on science funding?was clear: “Without the funding that went into developing CAR T-cell therapy, I and a lot of other kids would not be here today.” ? Watch the interview: https://lnkd.in/ejUQpQJi

The Emily Whitehead Foundation is proud to sponsor Crossing The Chasm: Navigating Innovation and Access to Advanced Therapies, a groundbreaking event uniting leaders in science, policy and industry to tackle real-world challenges with cell and gene therapies at scale. ? This event supports the 2025 Timmerman Traverse, a high-altitude trek to Everest Base Camp dedicated to raising funds for the Damon Runyon Cancer Research Foundation. With a goal of surpassing $700,000 in donations, these contributions will empower early-career scientists to pursue higher levels in the cancer research industry, driving the next wave of breakthroughs. The Emily Whitehead Foundation is proud to support our Executive Director, George Eastwood, and his efforts to organize this impactful event in advance of his trek up Mount Everest to support the future of advanced therapies!

We are continuing our Board Member Spotlight series with board member Rob Douglas (he/him)! Rob is Vice President of Commercial Excellence at Fortis Life Sciences. He has spent the last five years in executive leadership roles, particularly in the global markets of life science and cell and gene therapy. With over 15 years of experience in the life sciences and biotechnology sectors, Rob is an executive leader known for his collaborative approach. He is also a passionate advocate for diversity, equity, and inclusion, championing these values within his teams and across the organizations he leads, while striving to build safe and supportive cultures. Rob has volunteered with the Emily Whitehead Foundation since 2021, and has supported both the 2022 and 2024 Believe Ball Development and Sponsorship Committees. By joining the Foundation’s board, he hopes to provide continual support towards fundraising, visibility and partnerships. Having been close friends with Nicole Gularte, an eight-time leukemia warrior who is among the first patients to be treated with CAR T-cell therapy and a dear friend of the Emily Whitehead Foundation who lost her fight in 2020, seeing her determination and fight continues to drive and inspire Rob. Rob is committed to advancing the Foundation’s mission and continuing to provide critical support for cancer patients and their families. “We need to think creatively about how we engage and elevate the story of not just Emily, but the many warriors outside of CAR-T cancer treatment with the new advanced therapies and treatment options,” said Rob. “Partnerships and collaboration will be the key to success.”

We are grateful for the opportunity to be selected by Jesse McCool and the Law Rocks team as a beneficiary of this Los Angeles event! We appreciate every donation, event and fundraising effort with each playing a critical role to help the Emily Whitehead Foundation drive research for cell and gene therapies, grow our patient support programs, and advocate for access to advanced therapies. Thank you for supporting us as we advocate for less-toxic treatments for all cancer patients and take steps toward a cancer-free future!

Part of the Emily Whitehead Foundation’s mission is to create a personal connection between patients and scientists. At the Foundation's Believe Ball this past fall, we were fortunate to offer Warrior families a special experience to tour the Clinical Cell and Vaccine Production Facility in the Department of Pathology and Laboratory Medicine at University of Pennsylvania. This facility tests and creates T-cells used in CAR-T therapy. Families met the incredible scientists behind the cure, including Dr. Bruce Levine, founding director of the facility. Dr. Levine guided families through the lab, explained the cell production process, allowed them to see first-hand where testing is performed and where individualized cells are grown, and answered all their questions. On the wall along the entrance to the facility are photos of patients who have been treated, including Emily. These images serve as an inspiring reminder to the scientists of their life-saving work. The tour was a moving opportunity for the Warrior families and the scientists. The families got to see where the miracle of science happens while the scientists got to meet people whose lives they forever impacted. A special moment was shared during the last tour of the day, when Dr. Levine showed one of the Warriors where their very own cells were in the facility. Thank you Dr. Levine and the entire Clinical Cell and Vaccine Production Facility team for what you do and for taking time to connect with Warrior patients and their families.

We are continuing our “Warrior Wednesday” series with Maeve Frampton, who has shown no B-cells present post CAR T-cell therapy after her nine-month follow-up! Just before her fifth birthday, Maeve was diagnosed with B-cell Acute Lymphoblastic Leukemia (ALL). After two relapses following standard treatment and a bone marrow transplant that were unsuccessful, Maeve joined the CART-19 Prodigy huCART19 trial at CHOP and received her T-cells in May 2024. At her three-month post-CAR-T appointment in August 2024, her scans showed no leukemia present. At her nine-month follow-up, she was still showing no B-cells present. Today, Maeve is 11 years old and enjoys playing games and rock climbing. She and her family remain hopeful that her T-cells will continue to work and that she will be declared cancer-free. Read more about Maeve’s journey and her road to CAR T-cell therapy: https://lnkd.in/eQCytTZd

The Emily Whitehead Foundation was proud to recognize Tom Whitehead as the inaugural Beacon of Hope Embassador Award recipient at our 2024 Believe Ball, with the award being named in his honor as the Thomas G. Whitehead Beacon of Hope Embassador Award. The award was created to shine light on those who offer unwavering support to patients and their families and for being a beacon of hope along their treatment journeys when hope can be hard to find. He is not only the proud father of Emily, but he is also co-founder of the Emily Whitehead Foundation, a keynote speaker, author and journeyman lineman for Penelec, a FirstEnergy Company. He travels across the country and around the world to speak about his family’s story and to spread awareness and hope for a cancer-free future. Tom offers guidance, makes connections and is often the first individual families call when they are searching for alternative treatment options. Tom is a model for future Beacon of Hope Embassador awardees and it is the Foundation’s privilege to name this award in his honor to illuminate his impact. Read more: https://lnkd.in/dni_ESQq

The Emily Whitehead Foundation is excited to announce that George Eastwood has been appointed Executive Director on a permanent basis. George had been serving as Interim Executive Director since fall 2022 in addition to his role as Board Chair, which he assumed in fall 2021. “As Executive Director for the Emily Whitehead Foundation, leadership is not merely a role but a commitment to patients through pioneering cell and gene therapy breakthroughs,” George says. “I look forward to continuing to propel life-saving therapies into the forefront of disease treatment, and to cementing the Foundation’s position as a beacon of hope and support for all individuals who can benefit from advanced therapies.” George’s professional background has largely been focused on the creation of products, tools and services that support the development of cell-based therapeutics. As an early employee at HemaCare, he led global sales and business development, partnering with developers to advance autologous and allogeneic CAR-T cell therapies. He also has experience in the gene therapy start-up space both at Kytopen, where he served as Vice President of Business Development and Partnerships, and at Excellos, where he was a co-founder and helped to spin out the company from the San Diego Blood Bank. In addition to his role at the Foundation, George sits on the boards of the Alliance for Regenerative Medicine and CGT digitization company Autolomous, and the advisory board of Truetrials.org. Please join us in congratulating George!