Ori Spotlight Episode Twenty One – The Whitehead and Jones Families, Patient Advocates

Episode twenty one

In episode 21, Ori CEO Jason C. Foster had the honour of being joined by two families, both of whom are strong advocates for increasing the accessibility of CAR-T therapy: Emily, Kari and Tom Whitehead from the Emily Whitehead Foundation, and Lucy and Lewis Jones, parents of Opie Jones.

Aged 5, Emily Whitehead was diagnosed with acute lymphoblastic leukemia (ALL). After relapsing twice following conventional treatment, Emily was enrolled on a Phase I clinical trial for CAR-T therapy at the Children’s Hospital of Philadelphia where she was the pediatric patient in the world to receive CAR T-cell therapy. We’re delighted to say that Emily celebrated 10 years cancer-free this summer!

At the tender age of just 5-months old, Opie was diagnosed with infant ALL. Following unsuccessful steroid treatment, and a bone marrow transplant, Opie successfully received CAR-T cell therapy at Great Ormond Street Hospital for Children NHS Foundation Trust. He is now a happy and healthy child, celebrating 1-year cancer-free this year!

Jason sat down with both families to discuss their own experiences of CAR-T therapy – exploring the differences between the UK and US healthcare systems and how current challenges limit the accessibility of CAR-T for patients. They also shared their insights into the awareness of CAR-T amongst the healthcare community and how this is rapidly changing with increased advocacy for advanced therapies.

Connect with Kari Whitehead and Tom Whitehead, and the Emily Whitehead Foundation | Connect with Lucy and Lewis Jones