Jean-Marc first became aware of Lupus when his Art Teacher, Debra Highberger was diagnosed with Lupus over a year ago. Debra, an iconic and important figure in the Marblehead community has been fighting SLE for over 4 years. In the coming months Jean-Marc, in association with Acorn Gallery, will be collecting donations for The Brigham & Women's Lupus Research Center. The fundraiser will come to a close this summer when Jean-Marc's continental ride comes to an end.
What is The Acorn Gallery?
"Acorn Gallery is a school for the fine arts owned and operated by my husband Jack and me. It has been in operation for over thirteen years and we have had thousands of students come through our door. We start with children at the age of five and go straight through adults. Our longest attending student started with us at 12 and is still with us at 25. Now we paint side by side as contemporaries. Acorn is a place that is hard to describe. Although we are small we have a student base of 300. We are a progressive program that teaches traditional drawing and painting. Students are refereed to us by local public and private schools, psychologists and psychiatrists, as well as occupational therapists. Although our first students were special ed. we soon realized it would be to everyone’s benefit if we mainstreamed non special ed. students into our program.( Something that is usually done in reverse.) Today we can have a dyslexic student sitting alongside a valedictorian and no one would be able to tell the difference.
Our claim to fame is not only the fact that our students win first, second and third of every arts festival they enter but more importantly the $3,000,000 in scholarship money to attend college. Colleges now court our students every year. Boston University alone takes two to three a year on a full ride for four years at $52,000 per year. The reason our school does so well is not only what we teach but how we teach. Everyone that walks through our door is on equal ground with us. There is no competitiveness and everyone is connected both academically and creatively. Without asking, the older ones help the younger ones. I think this is because many of them were young at Acorn as well and remember. I didn’t realize this would be the case when we opened up so many years ago. But it evolved into an effective strategy that is easy for anyone to see as soon as they walk through our door."
Want to see more about Acorn Gallery? Watch the short Documentary on Youtube.
Why the Lupus Ride? - The Story
"Why do the Lupus Ride? Well, of course, there's a story behind it. Sure, a cross-country trip involves work and perseverance, but it's nothing compared to the reason why I'm doing it. The story of the Lupus Ride is really a story about Debra's perseverance. But before I talk about that, let me back up a bit. Before Lupus started affecting her life, Debra was an athletic woman. She could leg press over 500lbs and at least once a week road her bike about 40 miles between Marblehead and Gloucester. I too have always been a cyclist, but curiously enough we never got a chance to ride together. I remember a couple of summers ago, Deb and I were sitting on her back porch in the late afternoon talking. At one point I said 'How amazing would it be to ride a bike across the country? Can you imagine what you'd see? Waking up and riding into the sunrise, the mountains, and all the people you'd meet.' I wasn't thinking about it seriously, only fantastically musing about the idea, until Debra looked me straight in the face and just said: 'Do it.' With just that little push, a dream started to become a reality. The question became: why not? And if there is anything I've learned from this remarkable woman, it is that dreams, no matter how absurd, far fetched, or shadowed by impossibility, should be pursued. 'Do it' she said, as if were a matter of fact. Suddenly a mere fantasy had taken the most difficult step. Any dream can become simply that- a matter of fact - with a little work, and perseverance. In a moment I could see the setting sun at my back, spliced between the Rockies, taste the air, and feel the wind, the rush of speed, and hear the prairie silence just before sunrise. Then I learned something about the ability to persevere. SLE crept into Debra's life like the cold, affecting her fingers and hands, suddenly she had a sore throat that would not go away. Odd symptoms that were misdiagnosed again and again. I worked with Debra in the summers when I was home from school in British Columbia, and in the summer of 2007 I saw what Lupus can really do. The athletic woman I had known, now could barely hold a paintbrush. Her joints on fire with pain barely allowed her to walk. At no point did she ever give in or give up. Rain or shine, pain or no pain, Debra was up every morning for work and even though she needed help sitting and standing, sometimes walking, she kept going. Sitting still caused her pain, laying down caused her pain, but moving also caused her pain. It was a lose lose situation, but she kept going, she was determined not to let this get the best of her. After mis-diagnosis, switching doctors, and doing some of our own research, we finally found the Brigham & Women's Lupus Center. Debra enrolled in their program and our fears were confirmed, Debra has Lupus, Discoid Lupus and Rheumatoid Arthritis But then we witnessed a bit of a miracle. The team of specialists at the Brigham & Women's Lupus Center devised a plan specific to Debra, and with it under way, Debra's pain started to lighten, her range of motion improved, and with physical therapy, continued experimentation, Debra began to gain her old self back. I came home in December 2007 after being at school for a few months and I could not believe my eyes. She did not need help walking, standing or sitting, and the smile on her face shined while disbelief was written on mine...
But this is not a cure at work. As far as the research has come, an elite facility like Brigham & Women's can still only treat the symptoms of Lupus. As of yet the cause of Lupus, the root of the problem can not be treated. Debra undergoes a tough regiment of steroids, and once a week receives a shot of Methotrexate which is a form of chemo-therapy. She would say that she has about 85% of her old self back, and without a cure, she will never return to her former life. The summer of 2008 was smooth, a great session for the kids who were painting and for the most part Debra was back. I started thinking about my dream of cycling cross-country again, and during a revelatory conversation with my father it mixed with my respect and admiration for Brigham & Women's and Debra who first inspired me to traverse this long road before me. I walked into Acorn the next day and said to Debra that I'd decided to ride cross-country in honor of her."
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