Category Archives: Relay for Life

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

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  

 

 

 

 

 

Relay Fall River turning 20 in June

Fundraising, Relay for Life
Tents begin to sprout for Relay in late June each year in Fall River. People walk the track throughout the night to raise money for cancer research and patient support services.
Tents begin to sprout for Relay in late June each year in Fall River. People walk the track throughout the night to raise money for cancer research and patient support services.

Twenty years of Relay

Relay for Life of Greater Fall River observes its 20th anniversary this year. In honor of that event, the local committee is designing a commemorative t-shirt. At last night’s captains’ meeting they asked us to say why we Relay for part of the design.

Walk to remember…

I couldn’t come up with anything clean enough to go on a G-rated t-shirt. My hatred of cancer is well-documented and solidly rooted in experiences that long predate what I went through with my wife Jane. One of my best friends lost her father to cancer when we were in the eighth grade. I lost my favorite uncle to spinal cancer a couple of years later. In college, I watched another friend wrestle with her father’s eventually fatal colon cancer.

Twenty-six cancers in five minutes

As a young man, I watched two of my neighbors—people I spent lots of time with—succumb to cancer from a much closer vantage point. They lived downstairs from me. He had lung cancer. More than once his wife pounded on the pipes to bring me downstairs to help him get up from where he had fallen. Not long after his death, they found she had colon cancer. She died soon thereafter.

…committee is designing a commemorative t-shirt.

Last night, I made a list of all the cancers people I knew—or know—have dealt with. In five minutes, I had a list of 26 different cancers. For all but three, I knew someone who had died from them. And even for those three, the cancer deeply changed the people who had them—and the people around them.

Relay retirement

For Jane and me, teaching was a consuming passion that left little time for much else. We wanted to do things like Relay and the Marathon Walk—and planned to do them after we retired. We both had more than enough reason to. Instead, while we worked, we sent money to the Jimmy Fund and the American Cancer Society and a handful of other cancer research funds. We envied the people who had the time and energy to do more.

…I had a list of 26 different cancers.

And then, Jane died. She died of a cancer no one had ever heard of—and that almost no one seemed to care about. I now know more people who have that cancer—or have died from that cancer—than I know people who have had or died from every other cancer I have experienced in the lives of others combined. And the number of people I’ve lost to those other cancers is not a small number, either.

Why I Relay

I should be numb by now. I’m not. None of those deaths has had an impact on me that rivals Jane’s, but every one of them hurts—and every one of them reminds me how much more remains to be done. I may hate NET cancer more than the other cancers—but I truly hate them all.

We both had more than enough reason to.

I hate them because of what they do to the people who have them. I hate them because of what they do to the families—to the spouses and the children and the mothers and the fathers and the brothers and the sisters and the aunts and the uncles and the grandparents. I hate them because of what they do to the friends.

And then, Jane died.

So I keep walking. I keep talking. I keep writing and reading and looking for new ways to help raise the money and awareness that will finally drive cancer into the grave rather than the people who have it.

Find a Relay near you

If you’ve never experienced Relay for Life, you should. It’s one of the most amazing things I’ve encountered since Jane died. It’s a community of people who have fought cancer—as patients, as families, as caregivers. They celebrate the victories and mourn the losses and work to find the answers to every type of cancer there is. They work to support patients and caregivers in a dozen different and meaningful ways beyond research—from supplying rides and cosmetics to providing a place for a family to stay so they can be close to the person getting treatment.

I truly hate them all.

And if you are in the Greater Fall River area, you should join us June 22-23 at Bishop Connolly. Walk to remember Jane. Walk to remember John. Walk to remember the people in your life who have fought cancer to their dying breath—or to honor those who are still fighting, and hoping for a cure.

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.