Reflections on 15 Years of TargetCancer Foundation

Mar 28, 2024 | News

This milestone of TargetCancer Foundation’s 15 year anniversary has stopped me in my tracks. It is a long time to be doing this work and a long time to grieve someone. I was shocked to realize that I have now crossed the threshold of grieving the loss of my husband Paul longer than we were together. This anniversary has caused me to reflect and remember a year that I often would rather forget, but also to look back with awe at where we started and enormous pride at where we are today.

To set the stage: In 2009, Barack Obama had been elected President, and in Boston, the Red Sox were seeking a third World Series win in five years.

In our world, Paul was struggling with treatments for his cancer- trying one after another despite being told that none of them were meant for his disease. Instead of being discouraged, he was determined to keep trying until he found the right one, despite the intense physical toll these treatments took on him. Paul was convinced there was something out there that could help him- he just had to find it himself if no one else would. Our son Luca was only two years old, motivating Paul to never stop trying to heal and live the life he planned.

Using his trademark charm and wit, he decided to take control of the situation and quickly assembled a team of supporters and advisors to start TargetCancer Foundation to find people to pay attention to his rare cancer and to find that treatment he hoped was out there. Friends, family and colleagues rallied around him and he made TargetCancer’s first donation from his infusion chair during a chemotherapy treatment.

In 2009 there were no treatments specifically designed for cholangiocarcinoma. There were few, if any, dedicated research labs focusing on it, and a lack of basic understanding of this disease.

In 2009, Paul and I had nowhere to go for support. We were always the youngest people in the waiting room and felt completely isolated from our peers and from other patients with similar cancers. Neither of us, as patient or caregiver, felt that we knew how to find others who could understand what we were experiencing.

Paul died in August of 2009. Three days later, Massachusetts lost Senator Ted Kennedy to another rare cancer. The sadness was overwhelming. When I returned from Paul’s childhood home in Buffalo to our home in Cambridge, the IRS letter designating TargetCancer Foundation as an official 501c3 was waiting for me in our mailbox, dated August 22- the date of his death. Paul had given us our marching orders, our focus and direction. TargetCancer Foundation would continue and would make this horrific experience better for the patients and families to come after him.

What is different today in 2024?

I will skip the politics and the Red Sox updates.

Our son Luca is now 17 years old, a junior in high school, and has grown up learning about his dad and his commitment and passion for helping others in large part through watching TargetCancer Foundation grow and help so many. Luca has been to the Galas, cheered on our marathon teams, and met so many of you in our community.

By no means can I say that today in 2024, TCF has completely changed the reality or erased the challenges for rare cancer patients. But I absolutely can say that we have played a major role in the shift in focus and conversation around rare cancers. Today, rare cancers are not ignored. Today, Paul’s cancer has multiple identified mutations with drugs to target them. Today, a patient with a rare cancer should never be told that they will receive a treatment meant for a different cancer, but that there are tools to understand their cancer to create a treatment meant for them.

This is exactly what our TRACK clinical trial is doing for patients across the United States and I could not be prouder of this achievement. Today we have a community of clinicians, pathologists, genetic counselors and other experts who meet every Thursday in a Virtual Molecular Tumor Board to tackle the most challenging rare cancer cases from patients around the country.

Fifteen years later, we are working harder than ever because we know there is still so much work to do. We are grateful every day for our tremendous community of patients, families, caregivers, researchers, advocates and supporters that has grown up around us and continues to rally around and support each other. This community ensures that rare cancer patients and families do not have to feel alone.

Every single person we have worked with, who made a donation, who volunteered or ran the marathon over these past fifteen years has made an impact and has been a part of our success. Thanks to this tremendous community and some very hard work, the experience for rare cancer patients and families today is not what it was in 2009 when Paul started TargetCancer Foundation.

And for that I am grateful and proud.