Be forewarned

I try not to get political or controversial here–but today I can’t help myself.

…people will die every day from “rare” diseases…

I don’t care how you feel about Tom Brady and the New England Patriots. I don’t care how you feel about his suspension or the fine that has been levied against the team.

Tragically stupid

But some fans of the team have started a GoFundMe page to raise the money to pay the fine. Robert Kraft is a BILLIONAIRE! If the fine is not overturned on appeal, he has more than enough money to pay it. At his level of wealth, it’s chump-change.

I don’t care how you feel about Tom Brady…

Meanwhile, there are diseases in this country killing people every day that have to crawl on the ground, like the French peasants in Dickens’ Tale of Two Cities soaking up wine spilled in a dusty street, in order to find the money to support even the most basic research.

Cancer kills

Yesterday, we lost a NET cancer patient who founded one of the earliest online support groups for people with NET cancer. She’ll get an obituary–that her family will likely have to pay for–in the local paper and some notices on Facebook and elsewhere online. Outside the NET cancer community, no one will notice. She is one of the 34 people who died of NETs yesterday. She is one of the 12,000 people–mothers, fathers, sisters, brothers, wives and husbands–who will die from it this year–most after years of suffering real pain and real indignity.

… it’s chump-change.

Meanwhile, Tom Brady and the Patriots lead every newscast. Whatever pain and indignity they suffer, pales by comparison. They will pay their fines, sit out whatever number of games are ultimately required and move on. No one will die as a result.

Sad truths

I work every day to raise money and awareness about that disease. This week, I am doing Walking with Jane’s first Form 990 EZ. It is taking hours and is so depressing that I want to quit. Last year, we did multiple fundraisers and made multiple appeals. For all that effort, we raised barely $20,000.

…years of suffering real pain and real indignity.

Oh, we generated perhaps four times as much as that–money that never came through our door but went directly to the Dana-Farber Cancer Institute or the American Cancer Society’s Relay for Life. But even $100,000 is next to nothing when it comes to serious cancer research–where even a Phase I drug trial can be a $3 million enterprise.

The Patriots Challenge

NET cancer is not, of course, the only disease we ignore in this country: neurofibromatosis, cystic fibrosis, chordoma, pulmonary fibrosis, until last year, ALS–and we’ll see how long last year’s ice bucket challenge momentum continues–and dozens of others struggle against a tide of apathy and ignorance.

…even a Phase I drug trial can be a $3 million enterprise.

I have no doubt some Patriots fans will line up to pay off the $1 million fine. They’ll go back to their lives as though they’ve actually done something important in the world.

Real issues matter

Meanwhile, people will die every day from “rare” diseases like NET cancer, children will continue to go to school without breakfast–or even dinner the night before–veterans will continue to be denied treatment for injuries they got in service to this country. Thousands of other real injustices and real issues will be ignored or swept under whatever rugs are available.

…dozens of others struggle against a tide of apathy and ignorance.

But at least the New England Patriots won’t be out a million bucks.

(Editor’s Note: The sad part of this is I like Bob Kraft. He’s done a great deal to fight cancer and fund research. He’s not the problem. The half-witted fans who think this GoFundMe project is a good idea, are.)