Dear Friends and Family,

I hope this note finds you well and soaking in the joys of summer.

In just one week, I’ll be back on the bike for the Pan-Mass Challenge — a ride that means the world to me. As many of you know, Dana-Farber Cancer Institute (DFCI) is the place that cured me of Primary Cutaneous B Cell Lymphoma eight years ago. Every mile I ride is a thank-you to the incredible team that gave me back my health and a robust future. And once again, I’m asking for your support.

This year, I’m riding alongside my friend and colleague Dr. Chris Reilly as part of our team: Cure TBD.

What’s TBD? It stands for Telomere Biology Disorders — a group of rare, inherited diseases caused by mutations that make our telomeres (the protective caps at the ends of chromosomes) too short. Think of telomeres like the plastic tips on shoelaces — without them, the laces fray. In people with TBDs, the fraying happens at the DNA level, and the results are devastating: bone marrow failure, pulmonary fibrosis, liver disease, and cancer. Many patients eventually need bone marrow or lung transplants. Too many don’t survive long enough to get them.

Chris and I work closely to care for these patients, but we urgently need better tools to treat and understand the disease. That’s where your support comes in.

Thanks to your generosity over the past few years, we’ve already raised $68,000. That allowed us to complete one major project: Chris built a test that helps us identify which telomere gene mutations are actually disease-causing. We’re already using it in clinic, and very soon these results will be accessible to doctors around the world: real-time impact for real patients. We’re writing up the results now and will share the paper once it’s published. 

But we’re just getting started.

That test covers only one of at least 11 genes known to cause TBDs. We need to develop similar tools for the others — and we’re also teaming up with collaborators to launch new clinical trials aimed at slowing or stopping disease progression.

My personal fundraising goal this year is $13,000, and our team goal is $33,000 — which would put us over the $100,000 lifetime mark. Every dollar helps us get there.

If you’re able, I’d be so grateful for your support — whatever the amount. And even if you’ve given before (thank you!), I hope you’ll consider pitching in again.

Thank you — truly — for being in my corner. I am truly blessed, with good health, great family, and all of you. 

Much love,
Benji

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The Dana Farber is the cancer institute affiliated with the hospital where I see patients - the Brigham and Women's Hospital. I am always so impressed by the exceptional care that my colleagues in hematology and oncology provide their patients, as well as the scope and impact of the cutting-edge research they are leading to find cures.

Unfortunately, funding for medical research, including for cancer, has not kept up with the accelerated pace of ground-breaking scientific advancement. More financial support for medical research is needed.

Often when donating to a medical charity, we need to choose whether our donations will be directed for patient care or for research. What makes the PMC so special is that all the money raised goes directly to supporting both patient care and medical research, including high-risk projects that are often difficult to fund.