Emily Whitehead Foundation Expands Mission Beyond Pediatric Cancer: Supporting All Individuals with Cancer and Rare Diseases

Lifts Up Policies that Accelerate and Increase Access to Life-saving Advanced Therapies

PHILIPSBURG, Pa., Sept. 30, 2025 /PRNewswire/ -- The Emily Whitehead Foundation, established by the parents of the first child to receive life-saving CAR T-cell therapy, today announced a significant expansion of its mission. Previously focused on pediatric cancer and exclusively CAR T-cell therapy, the Foundation is now extending its policy advocacy and patient support to benefit all cancer and rare disease patients, and to ensure access to all types of advanced therapies.

This pivotal evolution reflects the Foundation's enduring commitment to "Activate the Cure" for more individuals facing life-threatening conditions. Emily Whitehead ignited a global movement to advance CAR T-cell therapies and drive continued innovation of other advanced therapies by overcoming acute lymphoblastic leukemia (ALL) at the age of five. Now, over a decade after her groundbreaking CAR-T treatment, with Emily thriving and considered cured, the Foundation is uplifting the broader potential of advanced therapies.

"When we started the Emily Whitehead Foundation, our sole focus was on ensuring other children with pediatric cancer had access to the revolutionary CAR T-cell therapy that saved Emily's life," said Tom Whitehead, co-founder of the Emily Whitehead Foundation. "As the field of cell and gene therapies has rapidly advanced, we've seen the incredible potential of these innovative treatments to transform lives across a wider spectrum of diseases. It's time to extend our reach and fight for every patient who can benefit from these life-changing breakthroughs."

The Emily Whitehead Foundation's expanded mission will encompass:

• Broader Disease Focus: Advocating for patients with all types of cancer and a range of rare diseases for which advanced therapies offer promising avenues for treatment.
  
  
• Comprehensive Therapy Scope: Supporting awareness, access and research across the full spectrum of innovative treatments, moving beyond CAR T-cells to include gene editing, stem cell therapies and other cutting-edge treatment approaches.
  
  
• Policy and Public Advocacy: Advancing policies that support scientific innovation, accelerate the development of groundbreaking therapies, and ensure equitable access for all patients.
  
  
• Enhanced Patient and Family Support: Continuing to provide vital resources, connection to experts, and emotional support to patients and their families navigating complex treatment journeys, now for a wider patient population.

"By broadening our mission, we will further amplify the voices of more patients, connect more families with critical resources, and contribute to a future where advanced therapies are a viable option for everyone who needs them," said Emily Whitehead Foundation Executive Director George Eastwood. "By working closely with policymakers, building strategic coalitions, and championing reforms that remove barriers to care, we are committed to shaping a policy environment that enables faster cures and broader impact for individuals and families everywhere."

Symbolizing the Foundation's broader mission, the organization has unveiled an updated brand identity. A new logo retains visual similarities to the Foundation's original logo to capitalize on its existing recognition, but now features a sun icon to represent a new era of hope. The sun icon is made complete by "Emily Whitehead Foundation," reinforcing that hope is found through the work and support of the Foundation.

Additionally, the Foundation has launched a new website featuring information on advanced therapies, patient support resources, patient and family stories, signature events and grassroots initiatives, and ways for organizations and individuals to contribute to the cause.

At five years old, Emily Whitehead was diagnosed with acute lymphoblastic leukemia, a type of blood cancer that typically has an 85-90% chance of being cured in children. However, after receiving the standard treatment protocol, Emily relapsed twice and was recommended for hospice care. Holding on to the belief that Emily could be cured, Emily's parents Tom and Kari discovered a novel CAR T-cell therapy available as a clinical trial at Children's Hospital of Philadelphia.

Previously untried on a pediatric patient, CAR T-cell therapy reprograms a patient's own immune cells to fight cancer. As the first pediatric patient treated with CAR-T, Emily became the international face of the advanced-therapy revolution, inspiring a global shift toward curative treatments. CAR-T was her last chance for survival. Emily is now thriving and considered cured.

In 2015, three years after Emily's treatment, the Whitehead family established the Emily Whitehead Foundation to increase awareness of advanced therapies and the need for wider access to treatment. Since its inception, the Foundation has connected countless families with experts and clinical trials, helped pave the way for over 45,000 individuals to access CAR T-cell therapy worldwide, and raised over $4.5 million for revolutionary research so more patients can live a long full life.

About the Emily Whitehead Foundation

The Emily Whitehead Foundation, a non-profit organization, is the leading voice of the patient for advanced therapies. Founded by the parents of Emily Whitehead, the first child to receive life-saving CAR T-cell therapy, the Foundation advocates for greater access to advanced treatments and provides support to all individuals affected by cancer and rare disease. With a global network of scientists, industry collaborators, and generous contributors, the Foundation is driven to turn Emily's survivor story into countless more survivor stories. For more information, visit emilywhiteheadfoundation.org.

SOURCE Emily Whitehead Foundation