Emily Whitehead Foundation

Save the date for the 2026 Believe Ball! ✨ This signature Emily Whitehead Foundation event will be held on Friday, September 25, 2026, in Philadelphia, the city where Emily made history as the first pediatric patient treated with CAR T-cell therapy. Today, Emily is thriving, cancer-free, and represents the power of science, innovation, and determination. The Believe Ball brings together Warriors and their families, leaders in advanced therapies, and supporters from around the world to celebrate courage, hope, and the future of treatment for all patients who can benefit from advanced therapies. Learn more about the event and sponsorships: https://lnkd.in/evpYJeuY

Rain couldn’t stop the energy and spirit of the CAR-TCR community at this year’s BioIVT 5K, held during the 10th Annual CAR-TCR Summit in September. Despite cloudy skies and rainy weather, runners and walkers came together with purpose to make a difference for patients and families. Thanks to the generosity and enthusiasm of all the participants and supporters, the event raised over $21,000 to support the Foundation’s mission of helping patients access life-saving advanced therapies and receive the support they need along their journeys. We extend a huge thank you to presenting sponsor BioIVT, whose ongoing partnership makes this impactful event possible every year!

The Foundation was proud to take part in the recent 2025 CAR-TCR Summit, a gathering of leaders, innovators, and advocates advancing the future of cell and gene therapies. Director of Foundation Operations Adam Clark delivered a presentation highlighting the progress in CAR T-cell therapy and the vital role of patient advocacy in shaping the future of advanced therapies. His remarks were a powerful reminder of the impact of patient voices in driving our mission forward. We were also honored to partner with Hanson Wade, whose sponsorship enabled us to join with CAR-TCR participants to decorate and deliver 25 Believe Bundles to patients at Dana-Farber Cancer Institute’s outpatient CAR-T clinic. Each bundle included a heartfelt note of encouragement, and was a meaningful way to share hope directly with families. We’re grateful to Hanson Wade for making those Believe Bundle deliveries possible and to every participant who joined us in spreading comfort, joy, and connection to patients and caregivers!

"A new era of hope and momentum” Last week, the Foundation hosted an inspiring event titled, “Momentum: Celebrating a New Era of Hope” in Cambridge, Massachusetts celebrating the launch of our expanded mission to support all cancer and rare disease patients and to ensure access to all types of advanced therapies. The program opened with welcome remarks from Executive Director George Eastwood, who introduced the expanded mission and unveiled an updated brand identity. The evening also featured exciting announcements, including that the Foundation’s Believe Ball will now be held annually and that a new website now offers more resources for patients and families. Guests then viewed a screening of “Superhuman Body: World of Medical Marvels” featuring Emily’s story, followed by a fireside conversation with Dr. Bruce Levine and Tom Whitehead about the future of advanced therapy access and patient advocacy. The atmosphere was filled with connection and purpose, as supporters, partners, and colleagues gathered for meaningful conversations and shared inspiration. Together, we celebrated how far we’ve come and looked ahead with hope and momentum! View our new website and join us to bring hope, cures, and greater access to every patient: https://lnkd.in/gP_FeS4

Today marks a new era for the Emily Whitehead Foundation! ✨ With an expanded mission, we are extending our advocacy and support to benefit all cancer and rare disease patients and to ensure access to the full spectrum of advanced therapies. This evolution reflects our commitment to Activate the Cure for more individuals and families facing life-threatening conditions. Symbolizing our expanded mission, we are unveiling a refreshed brand identity that reflects our pledge to usher in a new era of hope. A sun icon in our new logo is made complete by “Emily Whitehead Foundation,” reinforcing that hope is found through the work and support of the Foundation. Alongside the new logo, we have launched a redesigned website, featuring information on advanced therapies, patient support, patient and family stories, signature events and grassroots initiatives, and ways for organizations and individuals to contribute to the cause. This is more than an evolution of our mission. It’s a promise to patients and families searching for answers that you are not alone. Together, we can Activate the Cures so countless more individuals like Emily can survive and thrive. View our new website and join us to bring hope, cures, and greater access to every patient: https://lnkd.in/gP_FeS4

Another day, another Believe Bundles delivery! The Foundation extends a huge thank you to Penn State Health Hershey Medical Center for welcoming us as we delivered 20 Believe Bundles to support their pediatric sickle cell patient community! The Bundles were personally curated by Victoria Gray, the first sickle cell patient treated with the now FDA-approved CRISPR gene-editing therapy, formerly known as CASGEVY, which has allowed her to live symptom-free for over five years. Victoria also connected with families through meaningful conversations about lived experience, access, and the emotional side of care. Through our Believe Bundles program, sponsors, supporters, and individuals help brighten hospital stays with care packages filled with blankets, books, games, and personalized gifts. These small gestures make a big impact, offering hope and connection to families navigating treatment.

As September comes to a close, we reflect on the patient stories that have shaped Childhood Cancer Awareness Month and National Sickle Cell Awareness Month. We remain committed to amplifying these stories of strength and survivorship, while advocating for everyone who can benefit from life-saving advanced therapies. We believe that every patient deserves access to innovative therapies that are less toxic and more targeted. We believe in a better journey for patients and their families, and a future where disease no longer defines their story.

We are continuing our "Warrior Wednesday" series with Victoria Gray! At just three months old, Victoria was diagnosed with sickle cell disease. From there, she began a lifelong battle with debilitating pain, severe fatigue, long hospital stays and countless blood transfusions. At times, her symptoms became so severe that she lost the ability to walk and use her arms. At age 33, Victoria decided to join a clinical trial in hopes of extending her life long enough to watch her children grow up. In 2019, she became the first person to be treated with CRISPR gene therapy for sickle cell disease. Today, Victoria is symptom-free! She works full-time as a patient advocate and international speaker. This September during National Sickle Cell Awareness Month, we honor Victoria’s courage and the resilience of all warriors living with sickle cell disease, while recognizing the urgent need for continued research, awareness, and support. Read more about Victoria's journey and her road to CRISPR gene therapy: https://lnkd.in/eDw9h-aN

How can science save a life? In the first episode of a new documentary series titled, “tell us your story” follow the journey of Dr. Bruce Levine, co-inventor of the first FDA-approved CAR T-cell therapy that gave Emily Whitehead a second chance at life and has since brought hope to countless patients and families worldwide. This emotional short film weaves together science, innovation, and personal stories, featuring Dr. Levine, the Emily Whitehead Foundation, International Society for Cell and Gene Therapy, and more. The film, produced by Marwin Gansauge from Tell Us GmbH, is non-commercial. Watch the film here: https://lnkd.in/epa7pWhJ

Foundation Executive Director George Eastwood will be speaking at the upcoming ASGCT Policy Summit on September 25 in Washington D.C. in a session titled, “Addressing CGT Bottlenecks: Focus on Clinical Care.” Advanced cell and gene therapies (CGTs) are transforming lives, but many patients face barriers to access. Families shouldn’t have to navigate coverage gaps, reimbursement delays, or the complexity of site onboarding to receive life-saving treatment. This session will bring together hospital leaders, state innovators, and funders to discuss how to turn patient-side burdens like travel, time, technology, and long-term follow-ups into standard components of care. The discussion will also spotlight policy changes that can close coverage gaps, speed-up reimbursement, and make safe community delivery possible so access isn’t determined by geography or hospital size. By applying lessons from pediatric oncology to autoimmune and other emerging indications and by building sustainable state-level access models, we can prepare health systems for larger, more diverse patient populations. The Emily Whitehead Foundation is committed to supporting patients and caregivers affected by childhood disease and to advocate for all patients who can be treated with advanced therapies. Panelists include: Susan Matesanz, MD, Children's Hospital of Philadelphia George Eastwood, Executive Director, Emily Whitehead Foundation Jeff Wagner, PharmD, Texas Children's Hospital Andrew Campbell, MD, Children's National Hospital Geoffrey Lomax, DRPH, California Institute for Regenerative Medicine