Category Archives: Boston Marathon Jimmy Fund Walk

The caregiver at 58 months

Boston Marathon Jimmy Fund Walk, Death, Fundraising, Grief, Jane, Uncategorized

Dreaming of Jane

We are walking through the woods on a trail that is wide enough that we can walk side by side. We are holding hands. We come to a clearing and turn to each other. Our arms come up into a tight hug. Nothing could be better.

…my brain is melting.

Then I wake up. I am alone. Jane is not there. The anger and the hurt well up in me in a storm that leaves me shaking. It is 4 a.m. Part of me wishes I could just roll over and go back to sleep–recapture that dream and live there. I know better. I will just wake up again. And every waking is like the moment Jane breathed her last.

Fifty-eight months

The pattern has gone on for months now. It may be years. It may date back to Jane’s death 58 months ago. I know I have come awake in the middle of the night virtually every night since she died in the same state of hurt and rage. Only recently have I begun to remember the dreams that bring me awake.

We are walking through the woods…

In December, it will be five years since Jane’s death: five years of trying to come to terms with that and all it means. Barring accident or some global pandemic, I can reasonably expect to live another 30 years or more. My days are filled with meaningful and important work. I can lose myself and my pain in that. Sometimes, for a few hours, I can almost forget that Jane is not out with her sister or in another room.

Caregiver roll

I read a piece last night on being a caregiver for a cancer patient who is your partner. It says all the right things about diet and note-taking and general support. It gives the standard advice about making sure to take care of yourself. But doing that last piece is easier said than done.

My days are filled…

Jane spent her last 28 days in the hospital. I spent every one of those days with her. The nurses made sure I ate regularly, kicked me out for a periodic afternoon away from her bedside, made sure I showered and shaved and stayed as positive as possible. They, and Jane’s doctors, held my hand through every crisis and helped me let her go at the end.

Caregiver price

I had every form of support from them, from our friends, from her family–and from mine. Total strangers reached out to us in unimagined–and unimaginable–ways. A security guard I’d never met convinced his entire church to pray for us.

The nurses made sure I ate…

I lost 25 pounds in those 28 days. I lost my mind several times. I lost half my soul and the one thing that really mattered in my life. I’ve regained–and lost–some of the weight. But despite support groups and professional help and meaningful work, my heart, mind, and soul are still a shattered mess. I still feel like Job, sitting in the ashes of his burned out farm, surrounded by his friends and neighbors who can only wonder what Job has done to bring God’s wrath down upon him in such a terrifying way.

The living

God’s wrath is not something I concern myself with. I am more concerned with finding answers that will prevent others from going through what Jane went through in the final months of her life, that will prevent their spouses from going through what I went through as caregiver and spouse in Jane’s last months–and what I have gone through since. If my pain is the cost of that knowledge, I may whine about it periodically, but I’ll pay the price.

I still feel like Job...

I’m tired, though. The last two months have drained me. I’ve done fundraiser after fundraiser, meeting after meeting, reading after reading. I’ve walked my father-in-law to the end of his life and held his surviving daughter’s hand through both that and her own broken heel–and she still faces months of physical therapy for the latter while she deals with the aftermath of her father’s death.

Some time away

There’s still a pile of work in front of me. I need to close the books on our team’s Jimmy Fund Walk for the year; I need to plan next month’s NET Cancer Awareness activities–including organizing our annual social mediathon for November 10; I need to get ready for the Gastrointestinal Visiting Committee at Dana-Farber later this month; I have a dozen articles I need to write about the papers presented in Vienna on NET cancer last month, as well as advice for caregivers; and two other projects I can’t talk about yet.

The last two months have drained me.

But my brain is melting. I’m taking a few days off. I’ll do some yard work, go see a play or two, maybe pick some apples or just find a quiet spot on a beach or forest somewhere that I can listen to the waves or the wind in the trees. Cancer may never take a day off, but humans have to sometimes.

I was a caregiver. Now, I am a Walker. September 27, I set out in the dark to take on the 26.2 miles of the Boston Marathon Jimmy Fund Walk. The idea is to end NET cancer--and the need for caregivers.
I was a caregiver. Now, I am a Walker. September 27, I set out in the dark to take on the 26.2 miles of the Boston Marathon Jimmy Fund Walk. 

The tip of the spear

Boston Marathon Jimmy Fund Walk, Death, Fundraising, Goals, Jane, Uncategorized

Holding the spear

I have never felt more alone than I did when Jane was in a coma. I had the words we had spoken to each other and the love we shared, but it was not enough. I remember saying to myself at one point, “You are all alone out here, on the very tip of the spear, and you have to decide whatever is going to be decided.”

It is what families do.

To this day, I don’t know that I made the right decisions in those last days of Jane’s life. I know I made the best decisions I could based on the information I had at the time. I had friends and doctors and nurses to help me think things through but, in the end, I had to make the final calls.

Alone in the dark

Sunday morning at 5 a.m. I boarded the bus that would take me to the starting line of the Boston Marathon Jimmy Fund Walk. It was 42F and sunrise was not even a glimmer on the horizon. It was the first bus and it got me there in time to eat a banana and down a bottle of water before the official starting time.

I had to make the final calls.

I walked up the hill to the start point, asked a police officer to take my picture, and headed off into the dark. I was wearing shorts, knee braces, and a t-shirt pulled over a sweatshirt. I’d decided to wear gloves against the cold and against the blisters my trekking poles would otherwise induce over the 26.2 miles.

The real Marathon

Most human bodies are not really designed for distances greater than 20 miles a day. When armies literally marched into battle, the wise commander limited his men to 20 miles a day, knowing that going much further than that would leave them too tired to fight at best–and vanished into the night at worst.

I walked up the hill to the start point…

Asking a human being to run a distance greater than 20 miles is even more difficult. As a friend who was preparing for his first marathon-length run reminded me, the first guy who did it died at the end after shouting the single word, VICTORY!”

A test of will

I’ve walked 20 miles many times in the last four years. I’ve walked further than that maybe ten times–four of them on the BAA Boston Marathon course for the Jimmy Fund. Most years, I’ve trained hard for that walk. The only difference that training has made is when and where my body starts to object strenuously to what I am doing to it.

…the first guy who did it died…

Yesterday, that point came about Mile 21. The latest it has arrived for me is Mile 23. But whenever that moment arrives, the Marathon Walk ceases to be about physical conditioning; it becomes, instead, a test of will.

My one talent

People tell me I am a gifted writer, a gifted speaker, a gifted teacher. I am none of those things. I am good at each of them, yes. But the word “gifted” implies some inborn talent and that, I don’t have. My heroes had those talents–and I wanted them. But I did not have them.

I’ve walked 20 miles many times…

I became a good teacher, a good writer, a good speaker because I worked to develop those skills–and was fortunate to have good teachers and good models to help me reach my goals. My single talent, if I have one, is that I am stubborn to the point of foolishness. If I want to learn something, I work at it until I understand it. If I want to do something, nothing gets in my way. Or almost nothing.

The tip of the spear

Five years ago, Jane was dying. Neither of us wanted that–and we fought with every measure of our being to stop it from happening. We failed–and every fiber of my being hurts every second of every day as a result.

…nothing gets in my way.

So when my muscles start to scream near the end of a Marathon distance, they have to compete with an even stronger vision–an even stronger voice: I remember Jane’s pain in the last days of her life; I remember my own pain in those days; and I remember the emotional pain I deal with every day; and I know I don’t want anyone to go through what Jane went through, what I went through, what I continue to go through.

Paying the price

Beside that pain, what my body goes through is nothing. It is a part of the price of finding a cure–and a minuscule part for me compared to losing Jane.

Five years ago, Jane was dying.

So I walked through the dark until the sun came up. I walked until I met up with the part of our team that was starting at 13.1 miles. I walked until my body broke–and then I walked some more. And when I crossed the finish line at last and shouted “victory” again, most of our team and another team of zebras was there to meet me.

Forming the spear point

And this is part of what I said to them: We are not merely an alliance; we are not merely a team; we are family. From this moment, no zebra awakens from surgery alone, no one fights alone, no one dies alone, no one mourns alone, no one stands at the tip of the spear alone.

…and then I walked some more.

“Today, we are the tip of the zebra spear. That spear is aimed at the heart of NET cancer and, together, we will kill it.”

The point of the spear

And to each of you reading this, I say the same thing–and make the same pledge: From this moment, no one fights alone, no one dies alone, no one mourns alone. At one time or another, each of us will stand at the point of that spear, each of us will strive to drive it through the heart of NET cancer–and in the end, we will kill it.

…we are family.

If that means walking, we will walk. If that means being part of a trial or study, we will do it. If it means speaking or acting or simply living, we will do it. It is what families do.

Yesterday was our day at the tip of the spear, one of many. But each of us has moments when we are there, individually or collectively. And through it all, never forget that we are all family--and never alone again.
Yesterday was our day at the tip of the spear, one of many. But each of us has moments when we are there, individually or collectively. And through it all, never forget that we are all family–and never alone again.

Thoughts before the Walk

Boston Marathon Jimmy Fund Walk, Death, Fundraising, Grief, Jane, NETwalkers Alliance, Uncategorized

The walk I’m supposed to be doing

I’m supposed to be retired. I’m supposed to be sitting on my deck, looking out over my finely manicured landscape design. I’m supposed to be relaxing and traveling to exotic spots. I’m supposed to be doing all of those things with Jane by my side.

…I know I have to try.

Five years ago this fall, all of that changed. Jane was diagnosed over the summer with NET cancer. In early September, we learned it had damaged the valves in her heart. In late September, we knew we were in a race between her cancer and her heart–a race we needed to win if we were to enjoy even a few months of retirement together.

The cost of failure

By Christmas, it was over–and I was alone. Sometimes, I try to explain what that means to people who have not experienced it. People tell me I am good with words–and maybe I am. But I have not yet found anything that even begins to convey the emptiness that loss creates. My father’s words come closest: “And now you know there is nothing anyone can say to you that will make this feel any better.”

…with Jane by my side.

Someone told me last week that if we had even one child, this would be easier to bear. My father had six of us when my mother died. I don’t think it helped much, even when his eldest son was equally a widower. The relationship between spouses is different from what exists between brothers or sisters or children or parents. Our spouse is the person we choose to be our family. It is the only family relationship we make a conscious choice to have.

Why keep going?

Someone else asked me this week why I take on so much–why I can’t just let this be someone else’s problem. And I have to admit there are moments I just want to walk away from all of it. Nothing I do will bring Jane back. Nothing I do will truly avenge her death. Nothing I do will make this emptiness I feel any better.

…I was alone.

But then I think of the people who walk today because, in part, of what we learned from Jane. I think of the doctors and nurses and researchers Jane’s life–and final days–inspired. I think of the literally hundreds of people I know who are fighting the same cancer Jane had.

I walk because I know…

And I think of their children and their husbands and wives and parents. I know how it feels to look across the kitchen table and see no one there, what it’s like to wake up in the night to half the bed being empty, what it’s like to see something and have no one to share it with–and I know I would condemn no one to those things.

Nothing I do will bring Jane back.

Jane’s death set me on this path–but it is not what keeps me there. Jillian and Andrew and Amanda and Ronnie and their spouses and children do. Pamela and Kelly and Josh and Alicia and all their loved ones do. And Jen and Matt and Eric and Emily and George–and all the doctors and researchers working on this difficult cancer–do.

Choosing to ignore limitations

In the end, I know I won’t find the cure for NET cancer. I know I’m not rich enough or well-connected enough to come up with the money that will find that cure. But I also know that if I don’t do all that I can I won’t be able to live with myself.

I know how it feels…

I know how to write. I know how to speak. I know how to walk. Doing those three things, perhaps I can inspire the people who have the money; perhaps I can inspire the people who have the knowledge and the skills; perhaps that will be enough. And perhaps not. But I know I have to try.

You come, too.

Each year, I cry "Victory" as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.
Each year, I cry, “Victory” as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.

Killing NET, one step at a time

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance, Uncategorized

A word about this post

One of the things I said I would do last winter when I was writing about goals and planning was I would share the letters I write for fundraising with the NET cancer community in the hope those letters would help other groups besides Walking with Jane raise money to help their regional NET cancer programs.

What follows is my summer fundraising letter. By modifying one paragraph and the link in the last paragraph, you can use it with your NET cancer fundraising efforts. You have my permission to do so, as long as you use it for that purpose.  I have avoided using headers and the like to make the job of using it as easy as possible.

The Letter

Dear friend,

Jane’s death haunts me. I still wake up in the middle of the night, reaching for her and finding nothing there but a pillow. I still hear the words her doctor said the day she was diagnosed. I still hear the hospitalist telling me there was nothing more to be done.
 
I still remember telling her we were letting her die because there was nothing left to try 
 
Ten thousand people were diagnosed with NET cancer in the US the year my wife was diagnosed with that incurable and nasty form of the disease. Last year, 15,000 people got the same diagnosis. 
 
We don’t know why the numbers have shot up so dramatically in the last five years. Part of it may be more doctors are aware of the disease than was the case then. Part of it may be the new methods we have to detect it. Or maybe something else is going on. We just don’t know.
 
And while we have new treatments coming online to ease the symptoms of this rare form of cancer, we are not significantly closer to a cure than we were five years ago. Every new thing we learn about it seems to further complicate the situation. I increasingly appreciate the adage among NET cancer doctors: “When you’ve seen one case of carcinoid/NETs you’ve seen one case.” Too often, what we learn from one patient does not translate well to another.
 
But neither I nor the doctors and researchers are giving up. There are too many patients—120,000 of them—who desperately need a cure. They want to see their children grow up, see them graduate from high school, go to college, get married and present them with grandchildren. They want to grow old with their spouses and celebrate all those anniversaries Jane and I didn’t get.
 
So, once again this year, I will take on the 26.2 miles of the BAA Boston Marathon course on September 27 as part of the Jimmy Fund Walk. As always, every penny I raise will go to carcinoid/NETs research at the Dana-Farber Cancer Institute.
 
I’m not a scientist. I’m not a doctor. I’m not a researcher. I’m a man who lost his wife—a man who doesn’t want others to go through what my wife went through—the insomnia, the flushing, the constant, endless diarrhea that is the lot of too many NET cancer patients. And I don’t want anyone to go through what I went through then—or what I go through now.
 
We need your help. Please give what you can. Help us kill NET cancer before it kills someone you love.
 
Sincerely,
Harry Proudfoot
Chairman, Walking with Jane
 
p.s. Even if you can’t give, please share this with people you know.  

DFCI Jimmy Fund Telethon reflections

Boston Marathon Jimmy Fund Walk, Fundraising, Jane, Uncategorized

Jimmy Fund Radio Telethon time

Listening to the WEEI/NESN Jimmy Fund Radio Telethon is something Jane and I did every year. We did what we could to support the Dana-Farber Cancer Institute through that fund regularly. We never thought either of us would need the very special services they provide cancer patients. Cancer did not, seemingly, run in our families. It was just the right thing to do.

…we still have work to do. 

Then Jane’s sister was diagnosed with Stage 0 breast cancer. It was caught so early and dealt with so quickly locally that DFCI was never seriously considered. That was true, in part, because of the research DFCI and other major cancer centers had done. Then we discovered Jane’s NET cancer and DFCI became the medical center of our universe.

The fairy tale that isn’t one

It’s one thing to hear the patient stories over the course of these two days. It is something else to live in one of those stories.  The dedication of the doctors and the courage of the patients sounds like something out of a Disney fairy tale.

Cancer did not, seemingly, run in our families.

Then you become a patient–or your spouse or your child does–and you discover just how special those doctors, nurses and support people really are. And you discover the deep reserves of courage you have and your spouse has and your children have. Human beings are amazing creatures when everything is on the line.

Doctors and nurses

I’ve walked people to the end of their lives more often than I like to think about. I’ve sat with too many people on the death watch, held too many hands in the final hours of life. I’ve met doctors who, even in those circumstances, were extraordinary. And I’ve met a few who needed serious sensitivity training.

Human beings are amazing creatures…

But I’ve never met a nurse who was not the soul of compassion at those moments. And I’ve never met a doctor at DFCI who was not just as compassionate and caring  and dedicated as the best of nurses. At DFCI, even the people behind the desk making appointments went through the compassion line three or four times more than the rest of us.

Case in point

I’ve told the story of our first visit with Jen Chan several times: how she and Jane seemed to immediately hit it off; how she immediately set up an initial octreotide injection and scheduled an appointment with an onco-cardiologist before we left the exam room.

…I’ve never met a nurse who was not the soul of compassion…

And I’ve told how she called just after we got home that night to talk about ideas she’d had about ways to proceed since we left her office. But I’ve never put it in the context of what the rest of her day must have been like. Jane was not the only patient she saw that day. She saw at least 16 other patients–not all of them NET cancer patients, since she was not working exclusively on NETs at the time.

Odds against

And Jane’s case was not a typical NET cancer case. Jane’s cancer was more advanced than nearly any doctor had ever seen. Her lifestyle had kept her alive with a liver that should long since have killed her. Only a handful of patients lived long enough to develop the heart problems she had. Her cancer was so far advanced, DFCI had turned her down for a drug trial.

…she and Jane seemed to immediately hit it off…

And Jen had two small children waiting for her at home. I can see her tucking them in for the night before picking up the phone to talk to us–two people she had just met that afternoon. Even now, I am awestruck by the person she turned out to be–the kind of person who would put the turkey in the oven and come see Jane on Thanksgiving morning when she didn’t have to.

Skin in the game

People mistake me for a hero sometimes. They think I’m being modest when I say I’m not. The truth is, when someone we love is in trouble, the adrenaline kicks in and we do what we need to do. I see it in a former student whose son was diagnosed with brain cancer and whose wife is now fighting breast cancer. I hear it in the voices of the parents on the radio talking about their child’s cancer. And I hear it in the voices and actions of the patients it is my honor to work with.

…I am awestruck…

But all of us–patients, spouses, children, and patients–have enormous emotional skin in the game from the start. We are, literally and figuratively, fighting for our lives and the lives of those we love. My life and dreams ended the day Jane died. Every day since has been about trying to find new dreams–trying to find a new life–absent her presence.

Defining unconditional love

But when Jen came through that door on that September morning, she took us into her heart the way we took our students into ours on the first day of school. It was something neither Jane nor I expected. We’d dealt with doctors for years, knew–and-to a degree understood–the reason they often stood behind a professional distance: patients die–patients with cancer more often than others.

My life and dreams ended the day Jane died.

Since Jane’s death, I’ve met a number of Jen’s colleagues at DFCI. They are all cut from the same cloth Jen is. They care about their patients the way nurses do–with hearts left open to the cold reality of death. I write about the need for unconditional love even for strangers. They practice that love every day.

Jealousy and joy

Sometimes, it’s hard listening to these stories on the radio over the course of these two days. Part of me is jealous just as part of me rejoices about the progress and cures that have evolved over the 14 years since they launched this fundraiser. The stories of the husbands and wives who speak on the air together about successful treatments and what those treatments have meant to them make me cry.

They practice that love every day.

But I know the fight is far from over. There are still too many stories that end badly–so many stories that end in a graveyard–so many cancers we have no answer to. And I know we still have work to do.

The Jimmy Fund Walk is not the only way DFCI raises money for cancer research. The last two days, WEEI and NESN have run a radio telethon for that purpose.
The Jimmy Fund Walk is not the only way DFCI raises money for cancer research. The last two days, WEEI and NESN have run a radio telethon for that purpose.

August NETwalkers Alliance Update

Boston Marathon Jimmy Fund Walk, Carcinoid/NET News, Fundraising, NETwalkers Alliance

The value of what we do

There is exciting news on the NET cancer front—and Dana-Farber is on the cutting edge of that news. Ten days ago, Lexicon Pharmaceuticals released some results of the TELESTAR Phase 3 of telotristat etiprate. The trials of that drug, run by Matt Kulke and Jen Chan, were successful to the point FDA  approval of the first new drug since 1999 for carcinoid syndrome seems likely sometime in 2016. You can read more about it at walkingwithjane.org/news.

My eyes are firmly on that prize.

The research that led to that drug doesn’t happen without the effort of people like us raising the unrestricted money to fund it. And without the role we play, the resources for the next big breakthrough may not be there.

Raising the stakes

Telotristat is not a cure for carcinoid syndrome—or for NET cancer. But it will mean a dramatic improvement in the quality of life for many patients. And it may help buy them time to take advantage of the next big thing when it comes.

There is exciting news on the NET cancer front…

But we need everyone to lace up their sneakers in the days ahead so that we can find a cure to this awful disease—and I don’t need to tell most of you how awful that disease is.

Reason to sign up today

We have just 45 days to go before Walk Sunday. So far, we have 19 people officially on the team. That’s just one-third of our goal for the Walk.

…we need everyone to lace up their sneakers…

Many of you have said you plan to sign up officially soon. If you sign up before tomorrow, August 14, at midnight, the Jimmy Fund will mail me your Walk T-shirt and I will deliver it to you, along with our team shirt for this year, before the Walk. Otherwise, you will have to stand in line on Walk Day to get the official shirt.

By the numbers

As of today, we have officially raised $17,020 against our goal of $80,000. I know of about another $9-10,000 that is not yet in the Jimmy Fund Walk’s coffers. I expect to raise another $3-7000 personally between now and then between a miniature golf tournament and my summer fundraising letter. And the next 45 days were huge a year ago for everyone, so I think we can get there.

…45 days to go…

But we can’t without your help.

Landers tournament boost

A good chunk of the money we are waiting on is from the very successful Hank Landers Memorial Golf Tournament Jenaleigh Landers and her family organized on August 1. I thoroughly embarrassed myself with my lack of golf ability—but also thoroughly enjoyed the day. Jenaleigh is still paying off the bills, but the basic estimate is well above last year, which was our biggest single day fundraiser of the year for 2014.

…I think we can get there.

Jenaleigh’s event is north of Boston. I’d love to see us get additional tournaments west and south of the city next year. Let me know if you have an interest in doing one.

Upcoming and ongoing

Jillian Emmons’ NORWEX fundraisers are also doing well. Contact her about them on our NETwalkers Alliance Facebook Page.

I’d love to see us get additional tournaments…

I’ll be doing a booth at a craft fair in Somerset, MA August 22. If you are a crafter and would like me to sell some of your work as a fundraiser for your Walk, let me know and I’ll come get it. I’m trying to set up to be at another craft fair over Labor Day weekend.

Speaking of speaking

If you are doing a fundraiser of any kind for the Walk, let me know. If you have a group you’d like me to talk to, let me know. If you’d like to try to get either Jen or Matt to a fundraising event you are doing, let me know. Getting the word out about NET cancer is as important as raising money.

I’ll be doing a booth at a craft fair…

You’ll notice I am already thinking in terms of what we can do a year from now. It’s increasingly clear I need to turn into a year-round fundraiser. Research is expensive.

The work we do

But more important is saving lives: giving patients better, longer lives with their spouses, children and grandchildren. Jane wasn’t here for our 25th wedding anniversary last year. Our 26th is September 2. I know how horrible that day will be for me. I know how horrible it was to watch her die.

Research is expensive.

We’re fighting so that others can have those anniversaries, birthdays and other milestones Jane and I will never have. My eyes are firmly on that prize. We need yours to be as well.
Pax et lux,
Harry
Help us smack down NET cancer. It's mid-August and Walk Day is just 45 days away.
Help us smack down NET cancer. It’s mid-August and Walk Day is just 45 days away.

July Marathon Walk Update

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

Patients are counting on us.

… we have 16 Walkers officially signed up…

We have a lot to do…

Bits and pieces

I’ll be working…

…help with your online fundraising letters and notes.

If a seventh grader can walk 13.1 miles and set an even bigger goal as an eighth grader, what's your excuse for not joining us?
If a seventh grader can walk 13.1 miles and set an even bigger goal as an eighth grader, what’s your excuse for not joining us?

June Fundraising Update

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

June numbers

As I write this, the Jimmy Fund Marathon Walk is 90 days away. So far, we have 16 registered walkers and have raised $12,500. That’s a long way from the $80,000 public goal we’ve set for this year—and an even further distance from the $100,000 goal several of us have talked about.

…every month needs to have plenty of effort…

My own fundraising is still lagging a bit behind last year. I’d hoped to be closing in on $10,000 by this point. But things are picking up, as they generally do at this point in the year.

A big donation

Robert Phelan and I presented a check for $3000 from SafeCo Insurance to the NET cancer program at DFCI earlier this month. That is part of the total above.

…we have 16 registered walkers…

You never know who will do what until you ask. Just talking to my dentist and his assistant may have netted us another four walkers from that office.

Raising awareness–and money

Last week was the Greater Fall River Relay for Life. While it has no connection to the Walk, it is one of my training milestones each year. And this year we tried to raise the level of awareness about NET cancer to a higher level by creating a massive zebra herd made of luminaria bags. Total, we created about 1200 bags, one for every ten people who died of NET cancer last year.

You never know who will do what until you ask.

We raised a total, so far, of $7776 for the American Cancer Society through the Relay, including close to $1400 at the event from sales of buttons and our clam cake and chowder concession. We managed to keep people on the track for just about every minute of the 18 hours of the event. Two of us walked nearly non-stop from about 11 a.m. until 6:30 a.m. on the night shift. Overall, the Relay has raised more than $210,000 for patient support and cancer research.

On the docket

We have four big fundraising events currently moving forward. Jillian Emmons, our Walk Hero, has done an online Norwex sales party, with her cut of the proceeds going to her Walk. Her friends, some of whom walk with our team and some of whom don’t, have organized similar parties to raise money either to support Jillian’s Walk or their own. If you’d like details, drop me an email and I’ll forward your name to Jillian. Or you can go here and drop her a note yourself.

…a massive zebra herd made of luminaria bags.

Jenaleigh Landers has set August 1 as the date for the Hank Landers Memorial Golf Tournament. Hank was her Dad, who died of NET cancer two years ago this month. The tournament will take place at the Bradford Country Club in Haverhill, MA. Tee time is 1 p.m. You can learn more about the tournament at https://www.facebook.com/events/980650735291973/

Players and sponsors

August 27 is the Walking with Jane Miniature Golf Open at Caddy Shack in Dartmouth, MA. I’ll put up a Facebook event page for this later in the week. Tournament entry fees are $10 for adults and $6 for children 12 and under. Caddy Shack is donating both the use of the course and whatever non-tournament players spend with them during the time of the tournament.

We have four big fundraising events currently…

If you know of a business that would like to sponsor our official NETwalkers Alliance team t-shirts for the day of the Marathon Walk, those are available again this year. Bronze sponsors pay $100 to get their business’s name on the back of the shirt. For $250 they get their business logo on the back of the shirt. For $500 or more, they get their logo on the front of the shirt. We already have three for the front of the shirt, one of which is a holdover from last year.

Bits and pieces

I must have all sponsor materials by August 15 so that I can get the shirt design finished and to the printer in time to get the shirts out before Walk Day.

If you know of a business…

Finally, a generous donor has offered to match all donations made to my Marathon Walk through June 30 at midnight. There is still about $400 left in that matching fund, so if you have not yet donated, this would be a good time to do so.

June has been a hectic month–and July is looking pretty busy as well. If we are going to kill this thing, every month needs to have plenty of effort put into it, whether by researchers or those of us trying to fund that research.

 

 

Filling out Form 990

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

An apology or two

I’ve had an insane week that has put me so far behind on a number of things I may never catch up.

First, my apologies: I have a piece in hand for liver radio-embolization. I’d promised the writer to get it back to him with my edits close to two weeks ago. I just haven’t gotten there. The piece is coming–just not as soon as I’d like.

…my bottom line. 

There is also a series on immunotherapy coming. I’ve, again, been too busy to write it and get it off to the doctor who has agreed to read it and make sure I don’t screw anything up. It is coming–just not quite yet. I want to be sure I get it right.

Life intervenes

Part of the problem is my father-in-law was admitted to the hospital again last weekend, one day before he was supposed to come home from rehab. He is doing better and is back in rehab as I write this, but it’s been a scary few days–and I’m not sure he is close to being out of the woods.

I want to be sure I get it right.

And then there’s the other fly in the ointment: I have been at work on our first long Form 990 EZ filing for Walking with Jane, Inc. For those of you not involved with running a foundation, we are required to file a form with the IRS every year in order to keep our tax exempt status. That is Form 990.

Living with the Form

That process, at the federal level, is insanely simple, until you raise more than $50,000 in a year. You file a postcard online that requires little more than your corporate ID number and a statement that you did not make more than $50,000. It takes about five minutes.

…it’s been a scary few days…

Unfortunately, the Commonwealth of Massachusetts requires you file one of the longer 990 forms if you go over $5,000, as well as a form of its own. That is significantly more complicated–and significantly more complicated than I anticipated. I now understand why our lawyer suggested we might want to think about an accountant.

Requirement makes sense

I understand why the Commonwealth requires the more complicated form. In fact, I wondered why the IRS didn’t require it as well. The detailed questions the form asks–and the records it requires one keep–make it pretty difficult for anyone short of a criminal genius to engage in fraud or embezzlement–at least I would think so.

That is significantly more complicated…

When time allows, I will post those completed forms on our About Us section of this website. I think it’s important that you see what kind of money comes through our door at this point–and where that money goes. It isn’t a huge amount–about $21,000 last year, if memory serves–actually passed through our hands.

Money vs. Money

That’s a very different number than the amount we generate each year. Most of the money we create for carcinoid/NETs research is given by donors directly to the Dana-Farber Cancer Institute, the American Cancer Society, the Caring for Carcinoid Foundation or the Carcinoid Cancer Foundation. Unless it is donated to our Jimmy Fund Walk, the Walking with Jane Fund at DFCI or to our Relay for Life team’s online site, I don’t even know that money exists unless the director of an organization says it happened. And they often don’t know it has.

It isn’t a huge amount…

 

I know it happens because I see on our stats page here that people clicked on a “giving” link to those organizations–but once you’ve gone to their site to make a donation, there is no paper trail here about what you gave them. And they have no idea that you arrived there from out site and made a particular donation–unless they have a better stats section than we do.

The point of the exercise

 

I can say with certainty that our Walking with Jane, Hank and Anne Jimmy Fund Walk team generated just under $67,000 for NET cancer research at DFCI in 2014, for example. I can also say, with certainty, that less than 20 percent of that money was ever held by Walking with Jane, Inc. I can also say with certainty that another $15,000 was donated  last year directly to the Walking with Jane Fund at DFCI that I set up in the year after Jane’s death–and that none of that money ever was a part of Walking with Jane, Inc., for all that I know Walking with Jane inspired that amount to be donated.

I know it happens…

And it doesn’t bother me. When I started on this journey my only interest was in finding a way to cure carcinoid/NETs. Part of that is about raising awareness: you really can’t cure something if you don’t know it exists. Part of that is about research–and you can’t do research without a steady flow of money. If people want to give that money to Walking with Jane because they don’t want to get on someone else’s mailing list, that’s fine with me. If they want to give that money to some other group engaged in fighting carcinoid/NETs because of something they read here or hear me say somewhere, that’s fine with me, too.

The ultimate goal

So long as we find a cure, so long as this disease goes into the dustbin of history with small pox and polio, so long as we find ways to let people take the walks Jane and I will never get to take,  I don’t care who gets the money or the credit. I just want this disease dead before it kills someone you love.

…that’s fine with me.

And that’s my bottom line.

For a neophyte, filling out the Federal Form 990 is an obstacle course under the best of circumstances. These have not been the best of circumstances.
For a neophyte, filling out the Federal Form 990 is an obstacle course under the best of circumstances. These have not been the best of circumstances.

 

 

May Marathon Walk Update

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

A Hero of our own

I’ll start this month’s update with some exciting news: Our team will have its own Walk Hero this year.

Jillian raised almost $7000 last year.

Jillian Emmons, who serves as one of our NETwalkers Alliance co-captains, has been named as a Walk Hero–and as our team’s official Walk Hero partner. What that last bit means I am not 100 percent clear on, but given the small number of Walk Heroes—one for each mile—this is a singular honor for both Jillian and our team. I know you will all join me in congratulating Jillian on her appointment.

By the numbers

Our official numbers, as of this morning, have us at five Walkers officially signed up and $7,639 raised so far. That’s good for fourth place in the team standings. However, I have an additional $2,000 in donations from my latest direct mail campaign that have not yet been credited. That will not move us up in the standings—we trail third officially by about $2500—but it does keep us on the top page of the leader board. The top team has raised nearly $13,000. We’re closing in on $10,000.

…this is a singular honor for both Jillian and our team.

The standings, though, are less important than what we are trying to do for NET cancer research. Jillian’s becoming a Walk Hero creates a platform for raising awareness about NET cancer. Every new member we pick up is one more spokesperson who also helps raise awareness. Every event we hold is another opportunity to spread the message about this disease and what it does.

The personal touch

Sometime in the next two months, our local daily and weekly newspapers will run stories about my personal Marathon Walk effort. They’ll run a picture of me striding along on a training walk. But the important thing about those stories will have nothing to do with me. They will give me the opportunity to tell our NET cancer story to an audience that may not have heard it before. That chance to educate people about this vile disease is every bit as important as the money our events will raise.

Jillian’s becoming a Walk Hero creates a platform… 

A few months ago, we received a check from Safeco Insurance because of the efforts of the people at W. T.  Phelan in Belmont, MA last year. In the next few weeks, we will create a photo-op with Matt Kulke and others to formally present that $3000 check. We could just have submitted that check and moved on. But that presentation, again, gives us an opportunity to get the word out about NET cancer and carcinoid syndrome and the ongoing research the Dana-Farber Cancer Institute is doing in that area.

Create Walk opportunities

As you think about your next event, please also think about it in those terms. As I say all the time, if you need me to come talk at an event, I’ll be there unless I’m already promised somewhere else. I’m sure others on the team can make similar offers. But each of us has a NET cancer story to tell—and those stories matter.

We could just have submitted that check and moved on.

While many of you know something about Walking with Jane, the foundation I set up after my wife died, most of you only know the webpage and what we do with DFCI. In addition to that, among other things, we give scholarships at the school Jane and I taught at and at Bridgewater State University, where Jane did her undergraduate degree and some of her graduate work.

Activity ideas

This year’s recipient of the BSU scholarship is Devin Kenney—a double major in chemistry and biology, who is also pre-med. He and his brother run a small company that does reptile shows. He has offered to do a show for free for us as a fundraiser. I have no idea how to make that work, but if you do, I offer you his services. Just let me know what your plan is and I’ll put you in touch with him.

…each of us has a NET cancer story to tell…

We are also looking for t-shirt sponsors again this year. I’ll have a letter shortly I’ll send out to team members for soliciting those. Sponsor levels include: platinum for $1000—the company logo on the front of the shirt; gold for $500—the company name on the front of the shirt; silver for $250—the company logo on the back of the shirt; and bronze for $100—the company name on the back of the shirt.

Moving ahead

We already have two platinum levels from money donated last year after the shirts were printed—including Safeco Insurance—and four bronze sponsors from people who jumped the gun locally, knowing I was going to ask. You can start without my letter if you want, but I must have all sponsors in hand no later than August 15.

We are also looking for t-shirt sponsors…

Saturday, I was at a local craft fair. The weather was too nice, so we didn’t do very well, but we made a little money and we educated a few people. Next week, we will do a meat pie supper for Relay for Life and a yard and craft sale in early June for the same group. I’m working on a mini-golf tournament and a comedy show and another direct mail campaign for the Marathon Walk. And I’ll set up a booth at additional craft fairs over the course of the summer. I’m retired and widowed. I have way too much time and not enough to fill it with.

The learning process

But I’ve learned a lot about fundraising and NET cancer both along the way. I’ve learned to listen to what people are saying. I’ve learned that there are people who know how to do things I have no clue about—and if I ask them how to do it, they’ll be glad to help me figure it out. The people in the Walk office are more than willing to get you together with people who know how to run a golf tournament—or anything else—and you should use them as a resource when you can.

I have way too much time and not enough to fill it with.

And I’m always here. If I don’t know how, I’ll find you someone who does. And if no one does, we’ll figure it out together. You can always email me at walkingwithjane@gmail.com.

Facing the Walk challenge

Jillian raised almost $7000 last year. Virtually every idea she had was brand new to both of us. Some worked really well. Some crashed and burned. But the one thing I know about NET cancer patients is there is no quit in them. There’s no quit in their caregivers either.

…we’ll figure it out together.

So here are the three challenges for this month: 1.) If you are not signed up yet, get signed up; 2.) recruit at least one other person to join our team; 3.) Raise some money. With 144 days standing between us and the Walk, we just need to keep moving forward.
Talk to you in June, if not before.
Pax et lux,
Harry
Jillian (right) is a Walk Hero this year. She is also one of our co-captains.
Jillian (right) is a Walk Hero this year. She is also one of our co-captains.