Friday, August 7, 2009

The End of Lunch for Life?

Lunch for Life... It was almost six years ago to the day that I most literally dreamt up the idea of Lunch for Life. I can remember it as vividly as if it were yesterday. Sydney was just 3 months into her diagnosis. We were just beginning to grip our new lives. Sydney was responding. I was just beginning to learn how much more needed to be done for research and how little funding was actually available. I was entirely frustrated. So much so, I dreamt about it. It was in one of those "dreams of frustration" that I envisioned Lunch for Life.

Almost at once, the idea began to take shape. While I wanted to ensure every last dollar was spent for research I really had no desire to set up my own foundation. I didn't want something in Sydney's name. I wanted something that was about all children with neuroblastoma, about all of our families.

After much research, I selected the CNCF as a beneficiary of our donated research funds. At that time they were the only neuroblastoma specific foundation I knew of and they also were one of the few that had a medical advisory board - which I thought was important to educate research decisions. The agreement was simple and had three parts. 1) If funds raised by Lunch for Life were going to benefit the CNCF they had to use all of the money to support neuroblastoma research, 2) they had to give me a voice in which research was funded and 3) they had to supply a method for secure online donations.

Ironically, at that time, I would not even disclose what the fundraiser was. They had no idea what I was going to do until the night before I began Lunch for Life. I was secretive and perhaps a bit paranoid. I did not want anyone to steal the idea. I knew it was a good one. But I also wanted to be absolutely sure the money Lunch for Life raised went to help our kids. Period.

From there it was history. During those first 10 days we would raise just over $125,000.00 and it only got better from there. The rest is in the research record books as we say. Lunch for Life would grow into what it is today with over 400 member families.

About a year later, I would officially become involved with CNCF. I would sit on the board (until I resigned that post a few months ago.) Years later I would even work for the foundation spending a portion of my time working on research initiatives, helping families, and fundraising. I was, and continue to be, passionate about helping children with neuroblastoma by working tirelessly to help find a cure.

When the foundation began to move away from what, in my opinion, was out of alignment with my passion -- helping find a cure -- I decided it was time for me to leave. And, because my purpose is what inspired me to create Lunch for Life in the first place, it seemed natural for me to move the funds generated by this program into something more in keeping with my philosophies. Therefore, I told CNCF, upon my departure, that Lunch for Life would be changing its beneficiary. At that point, it seemed a logical course of events.

Not so fast.

You see, at some point during Lunch for Life's lifetime, the CNCF trademarked the name. The issue was that there were some problems with others beginning to use the name. Believe it or not, American Express was after it at one point. Therefore, trademarking the name seemed to be a logical step. I had no idea how to do it and the CNCF offered to help protect the name so others could not use it. Perhaps I was naive, but I did not have the resources, attorneys, or know-how to do it. So, when they offered to help me protect the name, I accepted their help - for the name, that was all. I did not agree to transfer the Lunch for Life fundraiser to them. I never agreed to give anything else to them. I still wanted to be sure my passion for helping neuroblastoma kids would never be in jeopardy. We were simply protecting the name.

Nevertheless, that step turns out to have caused a lot of problems and, depending on what CNCF choses to do at this point could threaten to derail the mission of helping find a cure.

When I decided to leave the CNCF and I told them I was taking Lunch for Life, they looked at their bottom line and said "no"! They told me, that I could not use the Lunch for Life name as they now owned it. I was told I could only use the name if I continued to fundraise for the CNCF. Beleive it or not, to add injury to insult, they even offered to sell my name back to me for $750,000.00. You should probably know that no one ever took a single dime from the CNCF for working on the Lunch for Life website or the materials. In fact, for much of it, personal friends gave their expertise and their time to help Lunch for Life. It was always completely managed and maintained outside the auspices of the CNCF.

I understand the legal issue. CNCF trademarked the name and decided to play hard ball. However, the Lunch for Life donors are not concerned with legalities. They, like me, are interested in helping find a cure for our kids. To me it becomes less of a legal issue and more of an ethical one. I never thought CNCF would try to pull this. It just hits me as so morally corrupt that it makes my skin crawl.

So, for the last few months, I have been doing everything I can to reason with CNCF. I have been patiently trying to resolve these issues so that every penny of your generous donations will continue to go where they are needed -- to fund research. This is one of the very reasons that I have remained silent for so long - hoping we would find a solution and praying that we would both be able to quietly go on our own separate ways. In my mind, it is what is best for the kids. They have no capacity to continue Lunch for Life and I have no desire to participate in their organization.

Unfortunately, at this point, I don't see any kind of smooth resolution.

I told them that they would continue to benefit from Lunch for Life through August 21st, 2009. At which point I will be taking down the site and going in a different direction.

So, to make a long story short, this was handed over to the attorneys. I don't know what will happen.

I will tell you this though. If you donated to Lunch for Life, the funds must to be used for neuroblastoma research. Period. It will go to that purpose and you can be guaranteed that I will fight until my last breath to ensure that is the case. Secondly, if CNCF does not transfer the Lunch for Life name to me, it will end on the 21st. The CNCF may try to use the name but you should also know that it has nothing to do with me or any of the families that started it and it is being operated contrary to the mission that we believed when it was launched.

The good news?

Well, if you know me and have learned anything about my history, you know that I have a plan B through Z in place and ready to go. You can rest assured that there is something even bigger and better waiting in the wings. You should also know that we will honor all of the families' giving trees and ensure that every dollar we raise makes it into the hands of the researchers with the very best of ideas. We will fund the cure for neuroblastoma whether or not we own the name "Lunch for Life."

It is about our kids.

What will happen?

It is in the CNCF's hands. Time will tell but, at the very least, it ought to be fun to watch.

God, does that feel good to get off my chest. I can finally breathe again. How completely and utterly liberating.

Now, feel free to write, comment, yell, whatever you like. Have your voice heard. I will do my best to watch. The Dungan Five are on their way to Atlantis for a five day vacation. Phones will be nonexistent and email will be sporadic and sketchy at best. However, I can't wait to get back, full of energy and ready to fight for what is right for our children.

Purpose dignified!

DISCLAIMER: The content of this diary is the property of Mark Dungan. All words, phrases, and opinions are the sole property of Mark Dungan. I am not trademarkeable!


Crys said...

Mark- Thank you for fighting for all of our kids. You are amazing and we are lucky to have you on our side. I got a sneak preview of PLAN B and it is perfect. Too bad more red tape get in the way of helping our children. Stupid! ?? When the site goes down, will our donations stop coming out of our account?

Dennis Pyritz, RN said...

Each Wednesday at Being we feature a Guest Blog. This week we are highlighting neuroblastoma with two guest posts. The first is by Connie Powell, mother of Miss Madelyn, who recounts what the experience of diagnosis was for her and her family. In the second a twenty-four year old NB survivor, Erik Ludwinski, reflects on how cancer has affected his young life. I know that neuroblastoma has a strong blogging family. So thought you might be interested in visiting. Also please visit the “Neuroblastoma” section of our blogroll, Cancer Blog Links, to see if your site is listed.
Take care, Dennis

Team Russi said...

It's all so wrong and utterly contrary to what their purpose should be!! Ugh!!!!

I can't wait to hear about Plan B.