About my fundraiser
A 200 kilometer bike ride to raise funds for medical research
On Saturday September 8, my bicycling partner Alan Kennedy and I, Mark Cramer, will begin a charity bicycle ride of 200 kilometers, to raise funds for research into finding a cure for Crohn’s disease and ulcerative colitis.
Autoimmune diseases arise when the immune system mistakes some part of the body as a pathogen and attacks its own cells. These diseases are often painful and incapacitating. Ulcerative colitis and Crohn’s are inflammatory bowel diseases (IBDs), where the immune system attacks the intestines.
Three years ago, our son was stricken with ulcerative colitis. When early treatments failed, the medical team sent him home from the hospital with documents on various medications that had some chance of success. While I was reading these papers, looking for the advantages and disadvantages, my wife said that it looked as if I was “handicapping past performances” of a horse race.
In fact, one of the best horse race analysts we know is also a successful medical researcher. Alan and I know that our horse race handicapping colleagues will recognize the grave situation of having to “handicap” probabilities of medications that can affect the future of all those who suffer from Crohn’s and ulcerative colitis, because, as we say, “there is no sure bet”.
The first part of our bike ride will take us from Orleans along the Loire River to Tours, where we have chosen a race course we have never visited, to make our horse selection process more precarious. (Of course, there is no comparison between the gravity of choosing a medication and choosing a horse.)
On the second stage, Sunday October 7, we will bicycle to the Prix de l’Arc de Triomphe, the world’s most prestigious horse race, at Longchamp in the Bois de Boulogne near Paris. The night before, we will make our choice of horses known, and if we win, we will add those winnings to the pool of donations.
In my son’s case, none of the possible medications was a sure bet, so I made a “morning line”, which means estimating probabilities of each possible choice. We chose a medication with considerable side effects but which could suppress a part of the immune system without damaging others.
This medication worked well until a violent allergic attack. The doctors suspended its use and suggested other possible medications. We were again faced with more files of potential medications. I argued for one that functioned similarly to the previous medication but with fewer side effects.
In horse racing terms, we call this a longshot, since this medication had no successful test results for ulcerative colitis. However, there were successful results for Crohn’s disease. The doctors said they favored the same medication, but they wanted us to participate in the selection process.
This new medication worked well! Our son moved back to his own apartment, held a job for a year and a half and got a raise. But then, another violent allergic reaction caused the medical team to discontinue this medication. Soon, he began again to get his painful intestinal flare-ups. We were back at square one.
Once more we found ourselves “handicapping” for the best medication. We chose one that was in Phase 2 of research after a promising Phase 1. (Medical research goes through three phases.)
But there was a problem: research rules for Phase 2 mean our son can only take the medication for 38 weeks. Neither he nor his doctors are told whether he is one of the 67% of testers with the real medication or one of the 33% getting the placebo.
Meanwhile, he’s been able to go back to work part-time. The company understands that if he has to stop working because of a flare-up, he can make up the hours. (Often, IBD victims are not able to continue working at all.)
You might ask why we chose a medication that might be a placebo and that, even if successful, would be discontinued after 38 weeks. Well, all knowledge about these diseases is useful. Our son also understands that he is contributing to helping other people with IBDs.
Now you understand why we will be doing this challenging bicycle ride, to raise money for research for Crohn’s and ulcerative colitis, through the French association AFA (Association François Aupetit).
AFA finances research, educates the public and helps people cope with the disease. Though AFA is based in France, research is international. Our son, for example, is testing an American pharmaceutical product. Medical knowledge knows no borders.
Our bet at the Prix de l’Arc de Triomphe symbolizes the uncertainty of choosing treatments for IBDs. Your contributions will help medical researchers discover more certain options for the millions of people who suffer from IBDs.
Alan Kennedy is an art curator and specialist in Asian art who finds poetry in horse racing and bicycling. I, Mark Cramer, have been a writer of books on horse racing, travel and fiction, a racing journalist and university professor.
€ 1,690 Raised