opie-jones-foundation

The Whitehead and Jones Families, Patient Advocates

Mon, 10 Feb 2025 19:39:58 GMT

The Whitehead and Jones Families, Patient Advocates

In this special episode of the Ori Spotlight Podcast Jason C. Foster is joined by the Whitehead and Jones families. They talk about Emily Whitehead and Opie Jones’s experiences as children accessing CAR-Ts in the UK and US, how the families hope to increase public and healthcare professional awareness of CAR-Ts, and their ultimate mission to help enable widespread patient access to precision medicines.

What’s in this episode

01:11 – Emily’s CAR-T therapy journey
03:37 – Opie’s CAR-T therapy journey
06:15 – The criteria for CAR-T therapy treatment in the UK
07:23 – The US standard of care for cancer treatment
09:08 – Emily’s ten-year cancer-free anniversary plans and the status of CAR-T in the scientific community
13:37 – Lucy’s hopes for other families with children facing a cancer diagnosis
16:20 – Emily’s ambition to help enable widespread patient access to CAR-T therapies
18:38 – The awareness and approach to CAR-T therapies by healthcare professionals in the UK and US
26:05 – The challenges that prevent families gaining access to CAR-T therapies
32:23 – Tom’s hope for CAR-T therapies in the next decade

Hikers Scale Mount Snowdon for Childhood Cancer Charity

Mon, 10 Feb 2025 19:39:48 GMT

Hikers Scale Mount Snowdon for Childhood Cancer Charity

A group of dedicated hikers recently took on the challenge of scaling Mount Snowdon, the highest mountain in Wales, to raise funds for the Opie Jones Foundation. This foundation is a charity established by the parents of three-year-old Opie Jones, who is bravely battling leukaemia.

Key Highlights:

Fundraising Success: The hikers successfully raised £2,500 for the Opie Jones Foundation.

Charity Focus: The Opie Jones Foundation is dedicated to providing crucial mental health support and therapy for families navigating the challenges of childhood cancer diagnoses.

Advocacy for Kinder Treatments: Beyond fundraising, the hikers are also advocating for improved access to kinder, more effective treatments for children diagnosed with cancer.

To learn more about this inspiring fundraising effort and the important work of the Opie Jones Foundation, read the full article on the Hunts Post website: Mount Snowdon Hikers Fundraise for Opie Jones Foundation

Fireside Chat: Lucy Ellerker-Jones, Founder, Opie Jones Foundation

Mon, 10 Feb 2025 19:39:39 GMT

Fireside Chat: Lucy Ellerker-Jones, Founder, Opie Jones Foundation

In a deeply moving presentation, Lucy, mother of five and social worker, shared the incredibly personal and challenging story of her son Opie's battle with infant acute lymphoblastic leukaemia. Her account offers a powerful glimpse into the realities of childhood cancer treatment and the family's journey through hope, despair, and ultimately, resilience.

Key Points from Lucy's Story:

Unexpected Diagnosis: Opie, Lucy and Lewis's baby boy, was diagnosed with high-risk leukaemia at just five months old after what initially seemed like a minor illness. The diagnosis shattered their normal family life, plunging them into a world of hospitals and uncertainty.
Brutal Chemotherapy and Bone Marrow Transplant: Opie endured multiple rounds of intense chemotherapy, which Lucy described as incredibly toxic, causing severe side effects like third-degree burns and mouth sores. When chemotherapy failed, Opie underwent a bone marrow transplant, requiring a gruelling five-week hospital stay for Lucy and Opie, separated from the rest of their family.
Relapse and the Hope of CAR-T Therapy: After a period of hope and celebration following the bone marrow transplant, the devastating news of Opie's relapse arrived. This led them to CAR-T therapy at Great Ormond Street Hospital, a treatment they had initially learned about but hoped would never be necessary.
CAR-T: A Kinder, More Tolerable Treatment: Lucy highlighted the stark contrast between CAR-T therapy and previous treatments. While still requiring hospitalization, CAR-T was remarkably less toxic for Opie. His recovery was quicker, with fewer side effects compared to chemotherapy and the bone marrow transplant. He didn't lose his hair and was more interactive during this treatment phase.
Questioning Treatment Protocols: Witnessing the comparative tolerability of CAR-T led Lucy and her husband to question why this kinder treatment wasn't offered as a first option, rather than after exhausting and highly toxic conventional treatments.
Beads of Courage: A Tangible Representation of Ordeal: Lucy poignantly presented Opie's "Beads of Courage," a collection of beads, each representing a medical procedure or milestone in his treatment journey. This visual representation powerfully illustrated the immense burden and trauma endured by such a young child.
The Opie Jones Foundation: Turning Pain into Purpose: Driven by their experience and a desire to help other families, Lucy and Lewis established the Opie Jones Foundation. The charity focuses on providing mental health support to families affected by childhood cancer, recognizing the profound and often overlooked trauma they experience. They also advocate for kinder and more effective treatments to be available sooner for children like Opie.
A Message for the Medical Community: In a powerful closing statement, Lucy thanked everyone in the pharmaceutical industry, labs, and policy makers for their work, emphasizing that their efforts directly contributed to saving her son's life. Her plea to remember Opie and all patients underscores the human impact of their work and the ongoing need to push for better treatments.

Phacilitate's Women in Advanced Therapies, Alliance for Regenerative Medicine's

Mon, 27 Jan 2025 11:31:38 GMT

Phacilitate - Advanced Therapies Week

A big thank you to Phacilitate for inviting the Opie Jones Foundation to participate in this year’s

hashtag

#ATW25!

I’m always grateful to spend time with the inspiring ladies of Phacilitate's Women in Advanced Therapies , Alliance for Regenerative Medicine's Women’s Executive Forum, connect with the strong and passionate Chris White , and to continue to share Lucy Ellerker-Jones’ family story and how we support UK families through and beyond their childhood cancer journey.

I was touched to see how inclusive the patient voice was within the conference and by the resounding support we received from organizations that care deeply about creating hope for patients just as much as we do!