Friends of Jace Ward and Stanford CAR T-Cell DIPG Trials
The brain tumor DIPG is terminal on diagnosis. It will not wait. We cannot wait, we WILL NOT WAIT!
About 350 children in the U.S. will get DIPG each year. The diagnosis is terminal. Nearly 60 years ago, Neal Armstrong’s daughter Muffie died from DIPG. The experience devastated the family and left the Armstrongs feeling absolutely helpless. We put Neal Armstrong on the moon a few years later, and have watched everything our daily life - our cars, entertainment and homes advance with new science and technology over the decades. However, for DIPG, nothing has changed in the standard treatment. DIPG is exactly the same. Each child receives an outdated 6 week course of radiation and a hug for good luck with a 6-9 mo life expectancy. These children deserve more.
The trial that is being conducted at Stanford today is the most promising therapy we have seen yet. In fact, it’s not only promising, it’s exciting! The medical and research teams, using an Ommaya Catheter, are infusing CAR T-cells (Chimeric Antigen Receptor T Cells) directly into the brain stem tumor. The T-cells target the GD protein that is found in the DIPG tumors and kill the tumor cells. Jace, diagnosed with DIPG two years ago, was the first to use the catheter and has had five infusions. With each infusion, he had improved functions. Overall, his tumor volume decreased nearly 70%. Each infusion varies in effects, because as the T-cells kill tumor cells, the process causes varying degrees of inflammation that has to be controlled. It has been a learning process with each infusion. If the inflammatory response could be better controlled, perhaps more CAR T-cells could be delivered to wipe out the tumor in a few doses.
These early trials are extremely expensive and therefore can only accommodate a very limited number of children. Presently there are only 10 enrolled. In the future, as knowledge of the effects of the therapy is gained, people are trained, additional funding is obtained, it is planned for expansion to other institutions and many more children can be treated.
To expand the DIPG Car T Cell trial, Stanford needs a dedicated research Fellow, a Cell Pharmacist, and a research Nurse Practitioner. The Fellow and Cell Pharmacist have been funded and began work this month. The last step now is getting the Nurse Practitioner (NP) funded for two years. The Nurst Practioner is responsible for gathering the correlative data from patients. From blood draws to symptoms to medication management for pain and inflammation. Each patient is different and all information is so important to gather. We need to be able to have more kids enrolled in trials as soon as possible to help the children have more time, and perhaps a cure. We also need to learn from these children. Storm the Heavens, and Arms Wide Open, childhood cancer foundations are leading a group of foundations to fund the NP position. We need to fund the last $50,000 of the NP budget immediately.
DIPG will not wait and neither can we. Please consider helping get a Nurse Practitioner so this program can be expanded to others as soon as possible. Jace knew being one of the first in this trial meant it may not be the complete answer for him. However it gave him 6-8 great months with his family. He 100% believed it would be an answer for kids to follow. Please help fulfill his wish for all children diagnosed with DIPG to have HOPE for a future.
Your donation will go to Arms Wide Open Childhood Cancer Foundation. You will receive a receipt for your tax-deductible donation.