NET campaign progress continues

Julia has walked with us since she was nine at three different distances. Dan, her dad, once ran a half-marathon to raise money for NET cancer research. They campaign throughout the year to raise money in memory of Jane, who taught both Julia's father and mother.
Julia has walked with us since she was nine at three different distances. Dan, her dad, once ran a half-marathon to raise money for NET cancer research. They campaign throughout the year to raise money in memory of Jane, who taught both Julia’s father and mother.

My year-end letter

Dear friends of this ongoing campaign,

I had my final meeting of the year with Dr. Jennifer Chan, the head of the NET cancer program at the Dana-Farber Cancer Institute and the two people from the development office who supervise fundraising for the program on Wednesday. We talked about a range of topics, including research, funding, and awareness. 

Let it shine.

Four years ago, we launched 3-in-3: The Campaign to Cure Net Cancer at DFCI. The goal was to raise $3 million over three years for NET cancer research at the InstituteI. As I reported last year, we actually raised about $3.6 million over that time. This year built on those efforts and things we put in place during that time to try to ensure a steady flow of research money that was not reliant on government grants.

Campaign for Cure NET Now group

The first of those things was formation of the Cure NET Cancer Now group for the Boston Marathon Jimmy Fund Walk—which actually predates the 3-in-3 campaign. The captains of shuffle4danafarber, Zebra Divas, and NETwalkers Alliance met the previous winter to form the group that would serve as a way to bring all the teams interested in NET cancer research together to share ideas, mentor and inspire new teams, and present a united front to administrators at DFCI about the importance of the NET cancer program.

This year built on those efforts…

This year, we had five teams, two of them new, and raised over $195,000 for NET cancer research at DFCI. 

PMC NET campaign

Two years ago, Heidi Fischer formed a first NET cancer focused Pan Mass Challenge team, which I ride for. In the first year, that group raised more than their goal. This year Heidi’s Heroes raised over $240,000 for NET cancer research. Other teams and individuals have also moved to support that research to the tune of an additional $260,000 or more.

…raised over $195,000 for NET cancer…

In addition, a number of new named funds established by major donors contributed another $350,000 to the other amounts raised this year.  

Research campaign

All of that money goes to support neuroendocrine cancer research at DFCI from basic science to translational research that moves that basic science toward potential new treatments. 

…major donors contributed…

For me, the most important research is the basic science. We understand too little about this form of cancer to really understand how to cure it. But I also understand the need for looking at what we do know to help doctors treat patients fighting the disease right now have longer lives with a better quality of life. I’ve personally seen the suffering NET cancer patients endure. We need earlier, reliable detection. We need cures. But while we search for those things, we have a moral obligation to ease the suffering of current patients.

Research specifics

In terms of basic research, the program at DFCI is working with Dr. Matt Kulke, who is now at Boston Medical Center and researchers at The Broad Institute in Cambridge, on DNA sequencing of individual NET cancer cells in hopes that understanding what’s going on there will lead to a greater understanding of the disease.

We understand too little…

Another doctor is looking at genetics and how that may influence the way the disease works. 

More specifics

On the translational side, they are engaged in a retrospective study of temozolomide, and a Phase 3 trial of cabozantinib that also looks at its use in combination with immunotherapy.

…DNA sequencing of individual NET cancer cells…

And those are just the highlights of what is happening in just one place with regard to neuroendocrine neoplasms. In New Orleans, there is a chance they’ve found a way to detect intestinal tumors through DNA in stool samples. Other drug trials are under way at other NET cancer programs—as is other basic research.

Things have changed

I compare this with where things were just nine years ago and know things are far different than they were when Jane was diagnosed.  Then, there were just two drugs in trials and very little going on in basic research.     

And those are just the highlights…

All of this makes me enormously happy after what has been an emotionally difficult year. I’ve lost three good friends who were NET cancer patients and were very active in fundraising and awareness work. And I’ve been to far too many other funerals in the last 12 months.

We also discussed the awareness problem for primary care physicians and nurse practitioners. That is proving a very hard nut to crack. I’ll keep grinding on that problem, as will Jen, though how to do so remains a mystery. 

My personal campaign

But I’ve kept moving forward. I walked nearly 40 miles at Relay for Life this year, finished my seventh full Boston Marathon Jimmy Fund Walk (I’ve done shorter distances twice in the last nine years), walked for MS and Cystic Fibrosis, ridden 50 miles for the Pan Mass Challenge, done multiple fundraisers, produced an awareness campaign for social media that rolled out in November aimed at primary care doctors, medical schools, nursing schools and continuing education providers, and generally tried to make a positive difference wherever I could in the lives of others.

…where things were just nine years ago…

The Walking with Jane office in the basement I’ve been planning for years finally got completed in September and, while I still have some unpacking yet to do, the place is functional. We also got a very nice write-up in the local paper about Walking with Jane’s NET cancer efforts.   

Taking care of me

Outside of that work, I’ve continued my efforts to take better care of me. My brother David came out for Red Sox Opening Day again this year. We froze, again. We also took in a Bruins game and generally had a good time for a week. I made what has become an annual trek to Martha’s Vineyard where I took some photographs, sat on the beach, took some long walks, and visited with an old friend. I went to a yoga class last night—part of an ongoing effort to keep me spry and functional into my 150s.

But I’ve kept moving forward.

I continued my ongoing landscaping project by building two retaining walls that frame three new garden beds. I’ve since decided I need to build another wall and extend one next summer to get the right look and feel. I also invested in a battery powered mower I’m very pleased with in my ongoing effort to reduce my carbon footprint. The vegetable garden kept me in fresh tomatoes, lettuce, chard, peppers and the like for the summer and fall. There are lots of hot peppers in the freezer. I made chili yesterday.

Part of every year's campaign is to keep me sane through non-cancer projects. This year, building some retaining walls provided a physical and emotional outlet.
Part of every year’s campaign is to keep me sane through non-cancer projects. This year, building some retaining walls provided a physical and emotional outlet.

Campaign for the future

Technologically, I finished my move out of the 20th century when I dropped my landline in September. I also replaced the eight-year-old desktop computer I use for photography and design work with a newer model, and finally upgraded the software I use for those things. I’m still discovering the new things Photoshop and Lightroom can do. Thankfully, InDesign is still InDesign.  

…my efforts to take better care of me.

It’s been a strange year. I’ve made some progress physically (I’m down about 10 pounds from last year), mentally, and emotionally. Some friendships have deepened. I’ve reconnected with some folks I haven’t seen in a long time. But I still spend too much time alone. I still question what I’ve spent this lifetime doing. I still miss Jane. 

Campaign break

I’ve concluded that last piece is unlikely to change—that I just have to keep finding ways to cope with it. I got out socially more this year than last—and need to keep finding ways to do that. And questioning or not, I’ll keep trying to make a positive difference where I can. It’s what I do.

It’s been a strange year.

After today, I start my annual month away from all things cancer—and anything heavier than meditation, yoga, and some novels to be named later. This break will be more complete than those in past years. I won’t be on Facebook or Twitter at all. I’ll check into the website once a day for security and upgrade purposes but won’t publish anything there. I’m also stepping away from all things political for the month as well. I’ll check my email once a day. If you need to reach me, walkingwithjane@gmail.com or my personal address if you have it, will be the best ways to do so. Those of you with my phone number can reach me that way as well.

My wish for you

I hope this finds you and yours well and in good spirits. May the holidays you celebrate at this time of year be filled with family, friends, and great joy. And may the New Year be one of new light in all our lives. Let it shine.

Pax et lux,

Harry