What does your support of childhood cancer research really mean? See what Carlos Sandi has to say about what a difference the St. Baldrick’s Foundation and specifically the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, have made to his family.
The St. Baldrick’s Foundation is my favorite charity.
Don’t be fooled by the name. St. Baldrick’s is not a religious order. It is an army of grassroots volunteers dedicated to eradicating childhood cancer by funding the most promising research into new cures.
The volunteers are led by a handful of dedicated staffers who normally work out of an appropriately modest office in California (yes, I have taken the time to visit). Because of the COVID pandemic, they are currently doing their best to keep things on track working from home. Whatever the circumstances, staff and volunteers work hard to raise the money that sustains critical research.
A world-class Scientific Advisory Committee guides St. Baldrick’s so that the funds they grant have an enormously oversized impact relative to their annual budget.
I can say without a doubt that St. Baldrick’s has had an enormously oversized impact on my family.
Two of my three children have battled rare blood cancers. The St. Baldrick’s mission is very personal for me and I choose to contribute my time and money to St. Baldrick’s for one simple reason. I do not know of a more effective way to end childhood cancer.
St. Baldrick’s was one of the original grant funders for the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team. The idea behind the initiative was to gather top scientists and have them work together on fighting cancer by harnessing the power of the human immune system.
The core of the Dream Team is an amazingly collaborative group of researchers from top-notch institutions all across North America. They work together, share information and share resources to make sure that new scientific discoveries become lifesaving childhood cancer treatments as quickly as possible.
A Breakthrough for My Son
With St. Baldrick’s continuous support, the Dream Team has already realized this century’s most remarkable breakthrough in cancer treatment, CAR-T immunotherapy.
They made CAR-T cell therapy a reality for kids back in 2012. My son, Phineas, was fortunate enough to be one of the first kids to benefit from their work.
In early 2013, Phineas developed drug-resistant lymphoblastic leukemia. He desperately needed to have a bone marrow transplant, but we needed some way to get his cancer into remission first.
That investigational T-cell therapy was his only option. The research that led to those trials and the trials themselves were supported by St. Baldrick’s. His primary doctor during the trial was also a St. Baldrick’s Fellow whose position was directly funded by St. Baldrick’s.
If it wasn’t for CAR-T becoming available when it did, the harsh reality is that my son would have been dead seven years ago. I literally owe his life to St. Baldrick’s and that gratitude is a big part of what drives me to support them.
But It’s Not Just Gratitude.
My youngest daughter, Althea died of a different kind of cancer back in 2006. She had one of the rarest types of blood cancer, infant AML.
For a lot of parents, childhood cancer treatment means agreeing to things that no sane person would ever consider for their child. We allow these things to happen and our kids endure what we ask them to endure because the alternative is far worse.
Althea made it through nine months of brutal chemotherapy, radiation and a stem cell transplant but ultimately, she died two months after her second birthday. There’s a lot of hard days and tough decisions from that time that still gnaw away at me fourteen years later.
That ordeal and her loss constantly remind me of what other kids and families will be forced to endure if we don’t find cures for this unique subset of cancers that only happen in children.
The Trial I’ve been Waiting For
I serve as an embedded advocate with the Dream Team and I can tell you they are hard at work on a host of new treatments for the rarest and most lethal forms of childhood cancer.
They have delivered many more breakthroughs in the past seven years and last month, they started the clinical trial I have been wanting to see for over a decade.
This time, they are using reengineered T-cells to attack the same kind of cancer that killed my daughter. If it works, other kids and families will be spared a lot of suffering. That thought brings me some measure of peace.
I have spent a lot of time learning about how overlooked and underfunded childhood cancer research is relative to adult cancer research. As a community of advocates, we have made great progress towards increasing awareness of the problem, but funding remains a constant challenge.
The big problem is that there’s just not much profit in curing kids’ cancers. We do not have billions of pharma dollars pouring in and private grant funding remains the best hope for nurturing the most innovative ideas.
To make matters worse, the COVID pandemic has severely disrupted fundraising efforts, researchers’ ability to do their work and patients’ access to clinical trials. In the meantime, kids are still getting cancer and in a lot of cases, sustained research and new clinical trials are their only hope.
We Have an Oversized Part to Play
I have seen the St. Baldrick’s community adapt and find creative ways to raise funds in our new socially distanced reality. I have witnessed a doubling down on collaboration, cooperation and resource sharing among researchers. Despite the extraordinary circumstances they remain laser-focused on turning new discoveries into cures as quickly as possible.
I am proud to play a part in that effort and incredibly grateful for everyone who is stepping up right now.
These Kids Need Our Support
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