Dearest Friends and Family,

The summer is finally here, and I find myself once again reaching out to you for support as I gear up for the Pan Mass Challenge, a remarkable 192-mile bike ride from Sturbridge to Provincetown to raise funds for the Dana Farber Cancer Institute (DFCI) - the place where I was cured of Primary Cutaneous B Cell Lymphoma, a lymphoma of the skin. The fact that I can confidently say "cured" is a testament to the seven years without recurrence and the assurance from my oncologists that follow-up visits are no longer necessary.

The gratitude I hold for my medical team, and for DFCI, is immeasurable, and participating in the PMC is my small way of giving back. The PMC holds the distinction of being the most successful charity event in the country, having raised an astonishing $900 million since 1980, with $69 million alone in 2022! It's worth reminding that last year, due to contracting COVID just a month prior, I couldn't take part. However, your generous support enabled us to raise $6,000. Though short of prior years, this sum was utilized effectively. Over the six years of my participation, your incredible generosity has contributed to a total of $63,800!

While many aspects of this year's PMC will remain the same, there is one notable difference:

I have established a new team!

We call ourselves "Cure TBD" and are raising funds to support Dr. Christopher Reilly, a close colleague of mine, a brilliant clinician and scientist, and a rising star at DFCI. Dr. Reilly specializes in Telomere Biology Disorders (TBD!), a collection of genetic conditions that impact the ends of our chromosomes, known as telomeres. Just as the plastic caps on shoelaces protect them from fraying, telomeres serve as protective caps, preserving the integrity of our DNA. TBDs occur because of rare mutations in the genes responsible for maintaining healthy telomeres. Individuals with these mutations have unusually short telomeres, making them vulnerable to severe health complications, including bone marrow failure and leukemia, liver disease, and pulmonary fibrosis.

Dr. Reilly and I work together to diagnose and provide care for these patients. While we can offer supportive treatments and buy them valuable time, a cure unfortunately remains elusive, and most patients eventually require bone marrow or lung transplants. Tragically, many do not survive.

To address this critical situation, Chris and I, alongside our colleagues at DFCI, Brigham and Women's Hospital (BWH), and Boston Children's Hospital (BCH), are establishing a Center of Excellence dedicated to the care of TBD patients and the acceleration of research toward finding a cure.

We have already made significant progress. At BWH, my colleagues and I have developed protocols that enhance outcomes for TBD patients after lung transplantation. At DFCI, Chris and his mentor, Coleman Lindsley, have created platforms to study the functionality of the mutations causing TBDs. This powerful tool not only helps us better understand this condition but is already being used clinically to interpret genetic test results. Meanwhile, at BCH, our colleague Suneet Agarwal is making strides on several fronts, including the identification of at least four small molecules that can lengthen telomeres. This discovery raises the prospect of developing a cure for TBD. By joining forces and establishing a comprehensive research program that synergizes our resources and efforts, we are confident that TBDs will become curable within our lifetime.

To transform this vision into reality, we need your help. Research in this field is costly, particularly when involving patients. The funds we aim to raise, with your generous support, will propel our work forward. The advancements we make will be shared widely with the research community and will enable us to apply for crucial NIH grants to conduct the clinical trials needed to translate our findings into improved outcomes for patients.

In its inaugural year, Team Cure TBD comprises three team members: Chris, my dear friend Adam Kramer, and myself. Both Chris and Adam are embarking on their first PMCs! They have acquired all the necessary gear and have been putting in the miles on the road. I’ve already shed 18 pound and had some phenomenal rides. We are all very excited. 

My personal goal this year is to raise $13,000, and as a team, we aspire to secure at least $35,000. This amount will adequately support Chris's ongoing TBD genetics project. In the coming years, we envision expanding our team and raising sufficient funds to employ an additional research assistant, effectively accelerating the pace of our work.

I am endlessly grateful for your incredible generosity, and words cannot express how much I appreciate all that you have done thus far. I sincerely hope that I can rely on your unwavering support once again.  I wish you a delightful summer filled with cherished moments spent with your loved ones.

And should you happen to spot Cure TBD on the roads, please don't hesitate to say "Hi"!

With much love to you all,

Benji

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.