Category Archives: Boston Marathon Jimmy Fund Walk

An announcement

awareness, Boston Marathon Jimmy Fund Walk, Grief, Personal statement
I'll keep walking through the morning dark and into evening as we try to find answers to NET cancer, but in 2021 I'll take a step back for a year. I'll still walk, I'll still ride, but I need a year for myself to heal the wounds of the last decade.
I’ll keep walking through the morning dark and into evening as we try to find answers to NET cancer, but in 2021 I’ll take a step back for a year. I’ll still walk, I’ll still ride, but I need a year for myself to heal the wounds of the last decade.

Dear friends,

As many of you know, December of this year will mark the tenth anniversary of Jane’s death. This August will mark the tenth anniversary of her NET cancer diagnosis. This winter marks ten years since we were both filled with worries about her rapidly declining health.

But this year also marks 40 years since her first symptoms appeared—and 35 years since I first encountered the edges of those symptoms and the effects on her life. Those effects almost immediately began to affect my own life.

Since Jane’s diagnosis, NET cancer has become my constant companion. Since her death, I have devoted seemingly every waking minute to trying to broaden awareness of the disease and to create funding for research to bring about its demise. I don’t want anyone to go through the 30 years that Jane did between her first symptoms and her death. I don’t want any spouse to encounter the things I did because of her illness—and because of her death. 

In real terms, that meant drafting my first pamphlet on the plane to Seattle less than a week after we buried Jane, working on that while I was there, and drafting my first five-year plan for what became Walking with Jane on the flight home. Since then, I’ve written hundreds of letters and articles and proposals, given speeches, organized events and teams, walked and cycled hundreds of miles, inspired a few hundred people, and raised a small pile of seed money others have invested in research I hope will lead, eventually, to a cure.

Despite all of that, I’m frustrated—and still, it seems, deeply in mourning. 

And I’m mentally and emotionally exhausted. 

I took the last month off. I tried not to think about NET cancer, tried not to think about the patients we’ve lost in the last 10 years, tried not to think about the patients still dealing with the disease, tried not to think about research or funding or awareness. 

It helped. 

But it also underlined how badly I damaged I am and how much I need a much longer time away where I can focus on healing the injuries in my soul I’ve avoided dealing with since Jane’s death. I’ve never fully come to terms with that loss—and I need to.

That said, I’ve decided to declare 2021 a sabbatical year for me. I won’t abandon NET cancer—but for that year, I’ll place it firmly on a back burner. I’ll still do the Marathon Walk, still do the PMC, still engage in fundraising for those things—but NET cancer will cease to be an 8-12-hour day, six to seven day a week commitment for that year. I want to spend a year as a team member, not as a captain—or in any other substantial leadership role. 

My plan is to return to everything fully in 2022, barring my death or incapacitation.

Some will suggest I should not put this off for a year—that I should take this year. I thought about that—and the idea is supremely tempting. But I’ve made some promises that need keeping—and I need to recruit some people to fill in for me to keep the #cureNETcancernow group and the webpage and a couple other things going in my absence. Momentum matters—and I don’t want to risk even a small disturbance after a decade of all of us working very hard to really get things rolling on NET cancer.

Others may argue I should just keep plowing forward. Part of me agrees with that sentiment. I want NET cancer dead in the worst way imaginable. But the research I’ve seen over the last ten years convinces me we face a much longer fight than I imagined at the start—than I suspect many of us imagined at the start. My thinking is that I will be much more effective if I take the break my body and soul call for in 2021—both now and in the future. It will create a sense of urgency that will carry me through the coming year—and a renewed strength for the years thereafter.

Let me repeat: I have no intention of walking away from this fight permanently. I simply need to sit down for a bit before I fall down. 

What I will need is for people to take on some of the tasks I’ve taken on for a short time so I can come back to the fight refreshed.

I hope all of you had wonderful holidays. I look forward to seeing all of you in the year ahead.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane

Neuroendocrine cancers: problems and dilemmas

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NET Cancer Awareness Day/Month
The NETwalkers Alliance raises money through the Boston Marathon Jimmy Fund Walk for neuroendocrine cancer research. Morgan (left) has walked the entire route the last two years with Walking with Jane founder Harry Proudfoot (right) who lost his wife to NET cancer in 2010. Morgan was the last teacher Jane mentored and has been involved with Walking with Jane from the start.
The NETwalkers Alliance raises money through the Boston Marathon Jimmy Fund Walk for neuroendocrine cancer research. Morgan (left) has walked the entire route the last two years with Walking with Jane founder Harry Proudfoot (right) who lost his wife to NET cancer in 2010. Morgan was the last teacher Jane mentored and has been involved with Walking with Jane from the start.

Neuroendocrine cells

All neuroendocrine cancers come from neuroendocrine cells. Neuroendocrine cells are the way the nervous system and the endocrine system communicate and create the hormones and peptides our bodies need to do everything from build muscle to digest food to run away or stand and fight. They are involved in everything our bodies do to survive and thrive.

Lives depend on that attention and awareness.

Neuroendocrine cells are found just about everywhere in the body. As a result, neuroendocrine cancers can appear almost everywhere in the body. On the surface, at least, that makes them different from the ways we think about most cancers. When a cancer occurs in the lungs, we call it lung cancer. When a cancer happens in the pancreas, we call it pancreatic cancer. When we get cancer in the liver, we call it liver cancer.

Matters of body geography

But a neuroendocrine cancer in the lung, pancreas, liver–or anywhere else–is often a very different disease from the “normal” cancers that occur in those organs. They may have very different symptoms. They can’t be discovered using the same tests and scans. They frequently don’t respond to the same chemo and radiation treatments.

…neuroendocrine cancers can appear almost everywhere…

And some, but not all, produce hormones in significant enough quantities to have an impact on body chemistry. Those changes can speed up digestion, slow respiration, speed up heart rate, raise or lower blood pressure, change moods–essentially affect anything a hormone or peptide can affect.

Testing for neuroendocrine

Tests for hormone levels can be difficult to administer, as well as expensive. Until recently, for example, testing for serotonin, a hormone commonly produced by neuroendocrine tumors, involved a patient collecting all of their urine for 24 hours. That urine would then be sent to a lab to be individually analyzed for chemicals related to the breakdown of serotonin. Based on those levels, the lab would then extrapolate how much serotonin was being produced and whether or not that fell into normal ranges.

…an impact on body chemistry.

And no doctor is likely to order tests without better cause than a fishing expedition based on a group of vague symptoms that may or may not be explained better by something else.

More complications

Another complication in diagnosing and treating a neuroendocrine cancer is the very number of possible hormones involved and their impact on an individual patient’s symptoms. High serotonin levels produce very different symptoms from high adrenaline levels. And each may require a different treatment regimen.

Tests…can be difficult to administer…

As if that were not bad enough, neuroendocrine cancers come in at least two very different structural types. NET cancers are low grade, well-differentiated tumors that often grow slowly. That slow growth may be part of the reason traditional radiation and chemo therapies don’t work well on them.

The carcinoma difference

Neuroendocrine carcinomas, on the other hand, can be very aggressive. They are high grade, poorly differentiated structures. Their aggressive nature may make them more open to more traditional-looking therapies. But the success rate is not particularly high.

As if that were not bad enough…

In truth, for both types of neuroendocrine cancer, the only curative therapy we have is surgery. And that only works when the cancers are discovered quite early. Otherwise, our treatments can ease symptoms and/or slow the advance of the disease.

Researching neuroendocrine

Neither neuroendocrine cancer form is well understood. And we simply lack the funds to do enough fundamental research into their biology to create the knowledge that could lead to either early detection or a cure.

…the only curative therapy…

A large chunk of that kind of research funding is created by the NET Research Foundation (NETRF), though many NET cancer centers do raise and spend significant amounts to do that work–amounts that may, together, equal what NETRF supplies. The Neuroendocrine and Carcinoid Tumors Program at the Dana-Farber Cancer Institute, for example, raises over $1 million each year to fund research.

Barriers to diagnosis

Two significant barriers exist in the fight against neuroendocrine cancer. The first is awareness among primary care physicians and nurse practitioners about the disease. The Carcinoid Cancer Foundation uses the phrase, “If you don’t suspect it, you can’t detect it” to underline why physician knowledge and awareness matter. I would go one step further and suggest that doctors can’t suspect what they’ve never heard of. In too many cases, too many doctors and nurse practitioners have never heard of the disease.

…much research funding is created by NETRF

The second barrier is public awareness. Neuroendocrine cancer is the second most prevalent GI cancer in the United States. Only colon cancer has more diagnosed patients. Yet few people outside the neuroendocrine cancer community and their immediate families have ever heard of it.

Raising Awareness

I talk with doctors and nurses in a variety of settings. Even many oncologists have never heard of neuroendocrine cancer. I speak in public settings with some frequency. I am too often greeted by incredulity that such a cancer can have flown so long under the radar.

Two significant barriers exist…

Neuroendocrine cancers need a greater level of awareness and attention from both doctors and the general public. Lives depend on that attention and awareness. The #30NETfactsin30days Campaign is an effort to create that greater awareness.

I lost Jane eight years ago. I'm still fighting her cancer.

Help us #cureNETcancernow

Boston Marathon Jimmy Fund Walk, Fundraising, NETwalkers Alliance, Pan Mass Challenge
I lost Jane eight years ago. I'm still fighting her cancer. You can help.
I lost Jane eight years ago. I’m still fighting her cancer. You can help.

The myth of normal

You’d think that after eight years, Jane’s death wouldn’t hurt anymore; that the memory of watching her inject herself every morning and evening with octreotide would have faded; that I wouldn’t have to fight my way out of bed anymore.

I’ll keep riding and walking and making donations…


The truth is something else. You don’t lose a husband or a wife without pain, without creating difficult memories, without taking long term emotional damage. You learn to cope, but you never really get over it—never really get back to normal.

Why I help


People ask me why I’m still fighting to help find answers to NET cancer eight years after any answer we find would do Jane any good. My answer is simple: I don’t want anyone else to go through what Jane went through—and what I continue to go through. I want the day we have cures not only for NET cancer—but for all cancers.

You don’t lose a husband or a wife without pain…


I’m not a rich man. My wife and I were both school teachers. Our students mattered more than our paychecks—more than our retirement. I don’t drive a fancy car or live in a gated community. I can’t write checks the size I’d like to support NET cancer research. I do what I can. I walk the Boston Marathon Jimmy Fund Walk; I ride part of the Pan Mass Challenge; I organize events; I donate what my budget allows.

Any donation will help

I ride with Team Heidi's Heroes for the Pan Mass Challenge. Help me reach my $10,000 goal.
I ride with Team Heidi’s Heroes for the PMC. Help me reach my $10,000 goal.

That’s what I ask you to do—what you can. You don’t have to walk 26.2 miles or get on a bike for 50 miles or more. You don’t have to write a check for $10,000 or $1000 or $100. If all you can come up with is $10, that will help more than you can imagine. And if you can do more, I won’t say no. NET cancer isn’t a well-heeled cancer. We still measure what we have for research in millions, not hundreds of millions or billions.


We’ve made some progress. We’re better at diagnosing the disease than we were. We’ve discovered the disease is not as rare as people thought—it’s now the second most prevalent form of gastrointestinal cancer. We’ve found some drugs that slow the course of the disease and ease patients’ symptoms. We have some hopeful leads developed in part thanks to research Walking with Jane has funded through donations like yours.

Help fund a cure


But we still have no cure. Until we do, I’ll keep riding and walking and making donations and writing letters like this one in hopes of inspiring people like you to join us by contributing what they can.

We’ve made some progress.


I really do want to stand at Jane’s grave and tell her, “NET cancer is dead. Your life—and your death—helped kill it.”


Please do what you can to make that happen.


Pax et lux,Harry Proudfoot

Chairman, Walking with Jane

The 30th annual Boston Marathon® Jimmy Fund Walk on Sunday September 23rd, 2018. Along the Course, Beacon Street, Brookline. I captain the NETwalkers Alliance. Help us reach our $100,000 goal.
Help us reach our $100,000 goal. I captain the NETwalkers Alliance.

The first $2500 in donations to both my Ride and my Walk will be matched by an anonymous donor, for a total of $5000.


You can click on either the PMC or Jimmy Fund Walk to donate to support either my Ride or my Walk. Every penny from every donation at either goes to support NET cancer research.


Goals for 2019 for Walking with Jane

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance, Pan Mass Challenge, Relay for Life

I finished my sixth full Marathon Walk in 2018--and my eighth year on the course. This year, I had company on the full course, including Morgan Bozarth and Dan and Julia Hurley. One of my personal goals is to get at least one more full distance Walk in this year.
I finished my sixth full Marathon Walk in 2018–and my eighth year on the course. This year, I had company on the full course, including Morgan Bozarth and Dan and Julia Hurley. One of my personal goals is to get at least one more full distance Walk in this year.

Thinking about goals

I sit down to review the goals for Walking with Jane and draft new ones every January as part of the planning process. Doing so requires me to look not only at Walking with Jane as an organization but also requires I look at what the other groups involved in the fight against NET cancer are doing.

We need to spread the knowledge…

The reason for that is I see no reason to keep doing something others are doing better. We have limited resources. I try to work on the things that seem to me to have too few resources aimed at them.

Looking around

This year, I decided to zero everything out and start from scratch. I asked myself, “What do we do well—especially better than anyone else? What do we do poorly—or that some other group is doing so well and so broadly that we can step back from it? What are the holes that need to be filled regionally, nationally and internationally? What would I do if I were coming to this work today?”

We have limited resources.

Truth be told, while NET cancer has come a great distance since Jane’s death in 2010, a great deal remains to be done. Yes, patient awareness and support has come a great distance. The Carcinoid Cancer Foundation links patients to doctors and information about the disease at a very high level. Several groups sponsor both regional and national conferences aimed at patients and caregivers that are invaluable resources.

What do we do well?

Research funding has also improved markedly over that period as well. Thanks to generous donations, the NET Research Foundation has begun to establish a broad base of researchers around the world. Globally, there is more research going on than ever before—research we can hope will one day result in cures for NET cancer patients everywhere. In the meantime, that research is turning up ways to improve patient quality of life—as well as lengthening their lives.

Holes to fill

But too many primary care physicians remain ignorant about the disease. Even those who have heard of it often rely on vague memories of the past and know almost nothing about the latest research. It’s not that the resources to educate them don’t exist—it’s that they don’t know where to look.

What do we do poorly?

Nor does the general public have any name recognition for the most part, despite NET cancer being the second most common form of gastrointestinal cancer in the US.

Funding matters

We rely heavily on big donors for both awareness and research funding. Sometimes that money comes with strings attached, pushing researchers in particular directions. That’s not necessarily a bad thing. Drug companies only step up when they see science that is working—and we need to fund translational research that brings the results of basic science to patients who need treatments.

…too many primary care physicians remain ignorant…

But basic research rarely attracts those kinds of donors. We need to develop ways to consistently reach the $25-$1000 donors who together can make an important difference. Walking with Jane has helped spearhead efforts at the Dana-Farber Cancer Institute in that direction. Last year, those efforts created about $700,000—the lion’s share through Boston Marathon Jimmy Fund Walk and Pan Mass Challenge teams.

Lifting more boats

That was all part of a larger campaign to attract both large and small donors to the NET cancer program at DFCI. Over three years, 3-in-3: The Campaign to Cure NET Cancer, raised a total of over $3.6 million.

We need to develop ways to consistently reach the $25-$1000 donors…

We need to spread the knowledge of how to do that to NET cancer centers everywhere. Part of our goals this year is a major push to do just that.

The 2019 Goals

Our 2019 goals are broken down into three areas: Fundraising, Awareness, and Infrastructure. Some of the goals appear in all three areas.

Fundraising Goals

  1. Raise $900,000 in small donations for the Program in NET Cancer at DFCI
    1. Retain and Expand the #curenetcancernow Boston Marathon Jimmy Fund Walk group
      1. Set a group goal of $200,000 and 300 walkers
      2. Set a NETwalkers Alliance team goal of $75,000 and 30 walkers
      3. Set a personal Walk goal of $18,000
    2. Expand the number of riders for NET Cancer of the Pan Mass Challenge
      1. Set a total Ride goal of $700,000
      2. Help the Heidi’s Heroes team reach $250,000
      3. Set a personal ride goal of $12,000
    3. Help NET Walk and PMC teams develop effective fundraising activities
  2. Support efforts by the development office at DFCI to attract and retain large donors
  3. Raise an additional $20,000 to support the Primary Care Physicians NET Cancer Awareness Initiative (Laura Maguire Hoke Fund for NET Cancer Awareness)
  4. Raise $4000 for the Jane Dybowski Scholarship Fund
  5. Help other NET cancer centers develop effective small fundraising events for Walks, Rides, etc.
  6. Write and recruit fundraising articles for the fundraising section of the website and for the Walking with Jane Fundraising group

Awareness Goals

  1. Redesign website in support of the new vision and purposes
  2. Create both and materials for primary care physician conferences
  3. Book and attend primary care physician conferences
  4. Create press releases and pamphlets as needed
  5. Create PSAs as needed
  6. Do 2018 form 990 and post—with past years—to new website
  7.  Create a team for Relay for Life

Infrastructure Goals

  1. Complete Walking with Jane office
  2. Update computer system and printer as needed
  3. Design banners for craft fairs and PCP conference booth
  4. Redesign and rewrite website
  5. Maintain and expand social media connections
    1. SnapChat
    2. Others
  6. Create detailed monthly plans for all of the above
  7. Implement plans on a daily basis

PMC adds $500K to NET research

awareness, Boston Marathon Jimmy Fund Walk, Pan Mass Challenge

Word is unofficial

I’ve just received unofficial word that Pan Mass Challenge (PMC) riders raised $500,000 for NET cancer research at Dana-Farber this year. The exact amount won’t arrive until the final tally in January.

I’ll be riding–and walking–again next year

Combined with the money from the Jimmy Fund Walk, small donors will have combined their efforts to the tune of over $650,000 for NET cancer research at DFCI this year.

PMC, Walk boost 3-in-3 total

This also, unofficially, puts the total for 3-in-3: The Campaign to Cure NET Cancer at just over $3.5 million. The campaign closes in December and aimed to raise $3 million over three years to support NET cancer research at the Dana-Farber Cancer Institute in Boston.

…small donors will have combined their efforts…

This is a wonderful piece of news for NET Cancer Awareness Month in Massachusetts and for Worldwide NET Cancer Awareness Day on November 10.

Looking forward to next year’s PMC

My personal thanks to all those who rode and walked and to all those who donated. You are truly making a difference in the lives of others.

…a wonderful piece of news…

I’ll be riding–and walking–again next year–Gods willing and the creek don’t rise. We will, with your help, find the answers to NET cancer.

Help support NET research on foot or bike

Boston Marathon Jimmy Fund Walk, Fundraising, NETwalkers Alliance, Pan Mass Challenge, Relay for Life

Whenever the going got tough for her students, Jane challenged them with this quote. Sometimes, I need the same help it gave them.
Whenever the going got tough for her students, Jane challenged them with this quote. Sometimes, I need the same help it gave them.

The Path I walked

We started working on the idea that would become the Walking with Jane seven years ago this month. It was supposed to be nothing more than a Relay for Life team—the kind of thing Jane and I had hoped to do to help others after we retired that June. But Jane was dead—felled two months earlier by a cancer even her doctor had never heard of—and I was barely emerging from the shock of burying the greatest love of my life a month after her 56th birthday.

For seven years I mourned that loss. I can’t explain what happened December 10, 2017. I know I cried a lot. But something was different when I awoke the next day. I still hurt—I expect I always will—but the pain was muted—not as biting, somehow. She does not haunt my every waking moment, my every action, as she had for so long. I felt my brain begin to work again the way it once had.

Help creates knowledge

The time of mourning may have ended, but not the battle against the cancer that destroyed our dreams. That battle continues until it is dead or I can no longer carry on that fight.

And, with your help and support, we have made a difference. The money Walking with Jane has raised has provided the seed money to research NET cancer’s DNA, RNA and the microenvironment that surrounds the tumors. The RNA research may lead to a universal screening test for all cancers—not just NET cancer. We’ve helped create a new NET cancer model that lets scientists understand how the cancer works. And we’ve inspired others to step up in major ways to help fund all those studies and others that may lead to a cure.

Help creates trials

A year ago trials, inspired by some of that research, led to FDA approval of telotristat etiprate. The drug is not a cure, but it does slow the disease down while alleviating symptoms for some patients. Trials for a new therapy, CAR-T, that trains the body’s own immune system to fight NET cancers, will begin later this spring.

But the war against NET cancer is far from over. We’ve gone from diagnosing 10,500 cases a year in the US in 2010 to 22,000 cases a year today. We’ve gone from 105,000 people living with a NET cancer diagnosis in 2010, to over 171,000 today. Last month I read a paper that indicates four percent of all cancers have NET cancer features that complicate curing them.

Help fight any way you can

And the numbers keep growing. NET cancer is now the second most prevalent form of gastrointestinal cancer—trailing only colon cancer. It is not as immediately deadly as colon cancer or pancreatic cancer, but it is a killer, nonetheless—and one without a cure.

This summer, I’ll get on a bike for part of the Pan Mass Challenge. This fall, I’ll take on the Boston Marathon course for the eighth time. With every mile of each, I’ll raise money and awareness for NET cancer research. I know what patients and their families face if we don’t keep moving forward—and I’m determined not to let that happen.

So here I am, hat in hand, asking you for your help. NET cancer killed Jane. Every day, it kills patients I have met on this journey. It won’t let go of me—and I won’t let go of it until one of us is dead.

Please help.
Pax et lux,
Harry

Some other reasons to help

p.s.  I lost one of my closest remaining friends to glioblastoma in July of 2017. He was diagnosed in April of 2016. His illness consumed much of the energy I normally devote to this work. In August of last year, I had surgery to remove a basal cell skin cancer from my face. A recovery that was supposed to be measured in days turned into months when the cancer proved much larger than anyone anticipated. I’m fine. They got all of it. But sunscreen is now a daily ritual, even in winter.
p.p.s. Again this year, a generous donor is matching gifts to my Walk, dollar-for-dollar. There’s about $2200 left to claim at this writing for the Marathon Walk and $1280 left for the Pan Mass Challenge. This is an especially good time to help.
Join or donate to our Marathon Walk 
Join or donate to our Pan Mass Challenge Effort  

 

 

 

 

 

Walk–and Ride–season approaches–join us

Boston Marathon Jimmy Fund Walk, Fundraising, PanMass Challenge, Relay for Life

I did my first Marathon Walk to support NET cancer research in 2011--and captained my first Marathon Walk team in 2012. You can make a difference.
I did my first Marathon Walk to support NET cancer research in 2011–and captained my first Marathon Walk team in 2012. You can make a difference.

Walk–or ride–you can help

Research carries a hefty price tag. Part of the work Walking with Jane does is raise money for that research. You can help, either by participating in a fundraising event–or by donating to one. Starting this week, we will publish a weekly update on our major efforts–and the fundraisers we do to support those efforts.

Here’s this week’s update on my cancer fundraising.

Boston Marathon Jimmy Fund Walk

September 23—various start times and locations. Team Name: NETwalkers Alliance

The bulk of last week’s efforts went to setting up my personal and team pages for this event. Including the check I mailed out this morning, we’ve raised $6835 for NET cancer research through this event for 2018. That’s the fastest start I’ve ever had straight out of the gate—and leaves me $665 short of Four Star Pacesetter status. It was early September last year before I reached that level. I’m hoping to reach that this week.

The Jimmy Fund Walk Brunch was this weekend. Officially, the Landers Charity Golf Tournament run by team member Jenaleigh Landers and her family, was the second largest individual fundraising event for the Walk, raising $17,689.  The #cureNETcancernow group, of which the NETwalkers is a part, finished third among groups, less than $1500 behind the second place group made up of State Street Bank employees.

The Landers Tournament will take place August 4 at the Bradford Country Club in Haverhill, MA, if you want to pencil that in on your calendar. Details should follow shortly.

As of today, I remain the only person signed up for our team for the Walk. I hope to put out a recruiting letter this week, as well as a fundraising letter. But you don’t need to wait for either one. Just click to sign up or donate.

PanMass Challenge

August 4-5—various start times and locations. Team Name: Heidi’s Heroes.

I’ll take on the 50 mile Wellesley-Patriot Place-Wellesley round-trip on Sunday. I’ll be at the Landers Tournament on Saturday, so much as I’d like to do more…

I’ll reach $3290 raised for this once the PMC gets a check for $670 I have to send them. The team is at $23,245 this morning, but held a fundraiser yesterday in Dover, MA that has not reported in yet. That conflicted with the Brunch for the Walk yesterday, so I wasn’t there.

The team has another fundraiser at Orange Theory Fitness at the studio 610 Providence Highway, Dedham. This is an upbeat one-hour workout experience. If you have not tried it, you must come see what it is all about. You set your own fitness goals and work out in the company of peers and under the direction of a coach. Registration donation is $35. To sign up, go to PMC.org, donate to Team Heidi’s Heroes, in memo put “Orange Theory Fitness.” Then email Heidi (fischerheidi@msn.com) so she can add you to the class list. Need to sign up by Friday March 23.

Relay for Life of Greater Fall River

June 22, 3 p.m. to June 23, 10 a.m.—Bishop Connolly High School, Fall River MA. Team Name: Walking with Jane & John.

If you’ve never been to a Relay for Life, it is a one-of-a-kind experience in Fall River. As an event chair several years ago, I toured many different Relays. Fall River’s event is the most intense I’ve seen. We don’t do as much here as we once did—the work on NET cancer was always my lodestone, and the more responsibilities I took on for that, the less energy I had for Relay beyond the day of the event itself. But we have had a presence at every Fall River Relay since Jane’s death. We’ve become famous for our chowder in the food tent. This year, we’ll have chowder again, but replace Gail’s famous clam cakes with stuffed quahogs instead. Come help us feed the masses—and take a few laps around the track in memory and support.

The Relay Craft Fair is at White’s of Westport on May 5. I’ll be there to raise money for the Jimmy Fund Walk and the PMC.

So far, we have raised $560 and have two team members signed up. Please take a few minutes to sign in if you are going to help us serve that night.

This year, we’ve changed the team name to honor our dear friend John—Jane’s best friend in the science department at WHS—whom we lost to glioblastoma last July 1. John was a fixture at Walking with Jane events—and we all miss him very deeply.

Walk idea needs volunteers to work

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NET Cancer Awareness Day/Month

 

Raising awareness--or money--requires effort from everyone affected by carcinoid/NETs. We all have to take the lead in our local areas. An awareness walk in Boston seems a good next step.
Raising awareness–or money–requires an effort from everyone affected by carcinoid/NETs. We all have to take the lead in our local areas. An awareness walk in Boston seems a good next step.

A simple idea

Gordy Klatt had a simple idea in 1985. He was a doctor who’d seen one too many cancer deaths to sit on the sidelines. So he went to a track in Tacoma, Washington and started to run. He ran and walked for 24 hours. Friends and family supported him from the sidelines as he garnered pledges to the tune of $27,000.

…it is a puzzle we need to put together.

Somewhere in that 24 hours, the germ of the idea for Relay for Life was born: teams walking a track and raising money and awareness for the cancer cause. The American Cancer Society built a fundraising powerhouse from that idea–and arguably spawned hundreds, if not thousands, of team-based fundraising walks.

The walks we take

My friends and I participate in many walks over the course of the year. We do the local Relay, the Greater Boston Walk for Hunger, local walks for MS, Cystic Fibrosis, and scholarships, and, of course, the Boston Marathon Jimmy Fund Walk, the capstone of our year. This year, we tried to add the Pan Mass Challenge biking event–with limited success.

Gordy Klatt had a simple idea…

For most of those walks, we walk as Walking with Jane. But we do the Jimmy Fund Walk as the NETwalkers Alliance. That team is part of the second most successful Jimmy Fund Walk Group, #cureNETcancernow. Our bike team this year called itself the NETriders Alliance. Whether that name stays remains to be seen.

The walk we don’t have

What we don’t have is a NET cancer specific walk. Such walks–and even runs–do exist, but they are hardly as ubiquitous as walks for MS or Cystic Fibrosis, let alone Relay for Life. The closest such walk I know of is in New York. That’s a bit longer drive than I want to undertake for a 5k walk.

My friends and I participate in many walks…

The idea for a NET cancer awareness walk in Boston has kicked around the inside of my brain for a couple of years. Wednesday morning, if all goes as planned, I’ll pitch that idea to some of the people who run the Jimmy Fund Walk. I’ll seek their guidance and support for the project.

We need help

I know one of the first things they’ll ask is how many local volunteers we can get for the project. We’ll need people to help plan the route, figure out where to put support stations, and deal with local government to get permits and police. We’ll need day-of volunteers as well as people to work on the steering committee.

I know some day this spring or summer, I’m going for a walk in Boston to raise NET cancer awareness. I don’t want to plan that walk alone. And I don’t want to walk it alone. If you are in the Boston area, we need your help. Consider your markers called in.

Raising the stakes

This represents just one of many steps in putting NET cancer in the national consciousness. We need the average person to know NET cancer exists at the same level they know that brain cancer or ovarian cancer or cervical cancer exists. We need people to know it exists the same way they know MS or ALS exists.

There are many pieces to that puzzle–and this is just one of those pieces. But it is a puzzle we need to put together. Recent advances show this cancer affects many more people than we imagined just seven years ago. Without broader awareness in the general population we will never have the resources to help change the lives even of current patients.

 

End of year report for 2016 for Walking with Jane

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance

A year of ups and downs

2016 was a busy year, both for Walking with Jane and for me personally. As an organization, we made significant progress on a number of fronts, but lagged behind where I would like us to be in other areas. As an individual, I continued to struggle with my personal demons. Again, there were moments of significant progress—and moments of stagnation and regression. Grief continues to hammer at my heart, but the blows are softer and less frequent.

…a future with less hurt and more hope in it

As many of you know, Dana-Farber asked me to get involved with a fundraising campaign aimed at NET cancer in late August of 2015. We launched that campaign December 9 of last year with a presentation in Boston. I now officially chair that campaign–3-in-3: The Campaign to Cure NET Cancer. Our goal is to raise $3 million over three years for NET cancer research. As this year drew to a close, we were closing in on our first $1 million. That work has taken me to Boston on a regular basis to meet with doctors and researchers and professional fundraisers to help plan and execute that effort. It’s been a positive learning experience.

NETwalkers and #cureNETcancernow

Part of that effort involved, as always, our NETwalkers Alliance Jimmy Fund Walk team. For the first time since I took over as captain, I was not the top fundraiser on the team. That honor falls this year to Jenaleigh Landers, who has been there from the start. Her golf tournament in memory of her father has always put her in the second spot in recent years. The tournament was even more successful this year. Total, our relatively small team raised just over $39,200.

…closing in on our first $1 million.

In addition, we helped launch the first disease-specific Walk group, #cureNETcancernow. The group had four teams and raised just short of $160,000 for NET cancer research. We had nearly 200 NET cancer walkers join in that effort. Only the Dana-Farber employees group had more team members or raised more money—and most of the other groups were run by major companies like State Street Bank.

Ups and downs of a start-up effort

The result of those efforts—and those of a number of people riding for NET cancer research in the Pan-Mass Challenge–is Dana-Farber adding a new gastrointestinal research lab whose primary focus is NET cancer. We were also listed among the funders for a paper on NET cancer co-authored by Dr. Jennifer Chan, who was Jane’s oncologist at Dana-Farber.

…we helped launch the first disease-specific Walk group…

But tasks connected to the 3-in-3 Campaign forced me to cut back on some of the other things Walking with Jane has done over the last five years. Normally, I do two mailings a year for that, neither of which happened. I went three months without posting anything new on our website. Other things slid as well. Start-ups always take more energy than I anticipate, but I hope to get back to a more regular schedule on these other things soon.

Personal successes and losses

Not all of that had to do with the Dana-Farber campaign, though. On the good side, I spent six weeks again this summer teaching journalism fundamentals to high school students in a summer program at BU. The commute is a killer, but working with young people reminds me there is more to life than cancer.

Start-ups always take more energy than I anticipate…

And I needed that reminder especially this year. Two good friends were diagnosed with cancer this spring. Both are in treatment and doing well, by all accounts. But I also lost two NET cancer patients over the summer I had become close to. Their deaths underlined again for me why what I am doing matters—and why I need to keep doing it.

Keeping myself sane

I continued my ongoing landscaping and other house projects. The yard still looks like it’s under construction–because it is–but I finished the patio project, the back half of Jane’s memorial garden and the garden, back, front, and side pathways. I also got a good start on installing a small orchard and another pair of garden beds, while repairing the sinkholes that developed just after Jane died. I’m doing it all by hand, one shovelful at a time, which keeps me in shape and gives me a break from all the mental exercise my other projects force on me.

…why I need to keep doing it.

Indoors, I redid the dining room and bedroom and have a clear vision of what the finished study will look like. I took Jane’s chair in last week to be re-upholstered for that room. Two-thirds of the basement is cleared out and, in the next month or so, I hope to have the electrician in to do some wiring down there.

A year of rediscovery

I’ve also done a ton of reading, some of it related to cancer, but much more of it just for fun. I’ve rediscovered photography, done some writing, done some walking, lost 30 pounds, put 15 back on—bloody post-Marathon issues continue—and tried to build a life that makes sense again. Life feels both more and less empty.

…one shovelful at a time…

The sixth anniversary of Jane’s death was December 10—and it was awful. But I put up the tree for the seventh time without her and I felt good afterward. Somehow something lifted off of me and I felt like a human being again. Maybe Year 7 will finally see me healed enough to think about a future with less hurt and more hope in it.

I hope this finds you and yours in good health and spirits and that the year ahead will prosper you in ways great and small—and in ways you don’t see coming. Go have an adventure. I hope to have several.

Pax et lux,

Harry

Money we raised this year was instrumental in creating a new lab at Dana-Farber that will have NET cancer as its main focus. The lab will do other types of gastrointestinal cancer research as well.
Money we raised this year was instrumental in creating a new lab at Dana-Farber that will have NET cancer as its main focus. The lab will do other types of gastrointestinal cancer research as well.

Challenge sometimes is just keeping up

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Marketing NETs, NET Cancer Awareness Day/Month

What this challenge is teaching me

I think I need some help. This challenge has reminded me how difficult–and how undermanned–our fight against NET cancer remains. I write pretty quickly, but each of these posts represents at least three hours of writing time. Then I spend another hour putting in links, break-heads, and pull quotes before posting it to various pages and support groups. And often, before I write, there is research that needs to be done.By the time even one of the shorter pieces is ready for your eyes, it has 4-5 hours of work in it. I’ll spend another hour or two fielding comments and thanking people for sharing pieces every day.

If you’re interested, let me know.

I needed to update this website this month, as well. In reviewing what we have, I realized that most of the information on the other pages here is over a year old. I need to find the time to look at more up-to-date videos and check to see which links to other pages still have value–or still work. And lists of foundations and blogs and cancer centers all need updated as well. Gradually, I’m beginning to understand why most foundations and organizations have at least one person–and often more–doing nothing but social media and website stuff.

The fundraising challenge

But maintaining this website and keeping up a social media presence are not all I have on my plate. Walking with Jane tries to average one fundraiser every month. Most of those require a press release for local media outlets. Most also require I design and print posters and get them up in local businesses. Many events require tickets get designed and printed as well. Money gets counted and taken to the bank. The bookkeeping required even for an organization as small as Walking with Jane, makes me crazy.

I needed to update this website this month…

Then, we do three mailings major mailings a year and three smaller ones. Our holiday mailing works purely to bring people up to speed on what we’ve done over the course of the year. The other two major mailings prospect for individual donations to our Jimmy Fund Walk effort. The smaller ones recruit crafters and others for our annual yard and craft sale–and sponsors for events like our Jimmy Fund Walk t-shirts and our miniature golf tournament. I craft every letter and every envelope gets stuffed by hand. More bookkeeping follows.

Other WWJ challenges

Next, we go prospecting for grants to help fund the awareness piece. Next year, we hope to send out copies of two pamphlets to every primary care doctor in New England about NET cancer. If we can find the funding, I’d like to reach every primary care doctor in the US and Canada. I’d go beyond that if I could find the money and someone to do the translations.

…we do three mailings major mailings a year…

Throw in Form 990, an annual board meeting, several craft fairs, a summer gathering for volunteers, and you begin to see the scope of the challenge on just the Walking with Jane front. But I have other NET cancer irons in the fire.

The Dana-Farber challenge

I also chair 3-in-3:The Campaign to Cure NET Cancer for the Dana-Farber Cancer Institute’s  Program in Neuroendocrine and Carcinoid Tumors. I meet with doctors and staff there once a month to plan and execute the various parts of that effort. That has included designing a presentation aimed at businesses, civic and fraternal organizations. We are also creating brochures and public relations materials. A series of podcasts may happen next year. We also look for other ways to raise awareness of NET cancer and the latest research.

…we go prospecting for grants…

That work also involves serving as group leader for the #cureNETcancernow group and captaining our NETwalkers Alliance team for the Boston Marathon Jimmy Fund Walk. Next year, I will also take on at least part of the Pan-Mass. Challenge as we try to start a Program-focussed team for that biking event. Fortunately,  some overlap exists there since much of the fundraising we do goes to support Walkers on our teams.

The training challenge

Of course the Walking–I do 26.2 miles every year–and now the biking, require year-round training at my age. I do more in the spring and summer than I do in fall and winter, but I try to get some vigorous exercise every day. In the summer, I try to do at least one 20 mile hike a week, leading into the Marathon Walk at the end of September.

I also chair 3-in-3…

I also try to spend some time every week talking individually with NET cancer patients and monitoring the various support groups. I try to read a few NET cancer blogs each week as well. And, of course, I have the scientific papers to wade through.

The life challenge

Meanwhile, I somehow find time to have something that looks like a life. I work on the landscaping, spend time in my garden, read what Jane used to call “mind-candy,” and take some photographs. I like to cook and bake my own bread. And I write things other than NET cancer posts and try to keep up with what is going on in the outside world.

…I do 26.2 miles every year…

So it’s no wonder I always feel like I’m running behind. I’m clearly trying to do too much. And yet, I can’t see any way to drop any of this. It all needs doing and most of the people I know who could help have equally daunting schedules in front of them. We all do what we can.

Can we get a little help here?

Now if you’d like to get involved with any of this stuff, I need whatever help I can get. Some people have written pieces about their experiences with various therapies. Others have sent me their crafts to take on the road to the various craft shows I attend. All the money from those goes to NET cancer research. I have friends who come in to stuff envelopes a couple of times a year.

I’m clearly trying to do too much.

Interested? Let me know.  You can reach me at walkingwithjane@gmail.com. As one of our ministers used to say, “Many hands make light work.”

We try to average one fundraiser every month. That is just one of the challenges involved in ou fight to fund NET cancer research.
We try to average one fundraiser every month. That is just one challenge involved in ou fight to fund NET cancer research.