Gems for Duchenne

By September 22, 2005November 27th, 2018Tracy's Blog

Shortly after Charley was diagnosed with DMD, we realized that scientific research was our only hope for a better prognosis. Currently, there is no effective treatment or cure for the disease, so we would have to rely on the promise of experiments being conducted in labs around the world. Bringing a new therapy to market can cost tens of millions of dollars, so as soon as we started Charley’s Fund Benjy and I began brainstorming ideas on how to raise money. I remember sitting in the car one day last summer and passing a nearby inn that is owned by our neighbors. The thought of holding an event there must have crossed Benjy’s mind because he asked me, “Can you imagine throwing a party for such a sad reason?” No, at that point I could not imagine putting a smile on my face, sampling hors d’ouvres, and chatting it up with guests, even if in the end it was going to help move the research forward.

But here we are a year later, reflecting on the amazing event we hosted on Saturday, Sept. 10: Gems for Duchenne. Yes, it was a party. The parking lot was stuffed and the fabulous barn at Stonover Farm was humming with people. As I looked around the room, I saw an inspiring combination of old friends, new friends, and people I have never seen before in my life. The cocktail party/jewelry auction raised $55,000, and the total continues to rise as we sell the leftover jewelry and collect donations in honor of the event.

In one short year, how did we get to a place we never thought we’d be able to reach? Two factors propelled us toward this incredible night. First, the promise of the research. We hold in our hands a real chance to make a difference, and this knowledge drives us to raise money relentlessly. Second, the support of the community. As we planned Gems for Duchenne, it seemed like everyone around us wanted to help in whatever way they could. The community was rallied by my friend Maria Sirois, who thought of the idea for a jewelry auction and spearheaded the entire effort. Legions of helpers gave up their free time to stuff invitations, pick up supplies, polish jewelry, clean up the barn, and engage in a whole bunch of other tedious tasks. Jewelry designers, retailers, and friends donated boxes of jewelry, from strands of plastic beads to 18 karat gold necklaces and sparkling diamond rings.

  • Suky and Tom Werman of Stonover Farm generously offered up their incredible barn, which was the perfect place for a Berkshire party.
  • Jeff Taylor of Taylor and Miller Architecture and Design built The Giving Tree to display the Charley’s Fund Believe bracelets.
  • Dish, Domaney’s, Nejaimes, and Spirit Shoppe donated all of the liquor.
  • Firefly practically gave away the food.
  • Berkshire Flower Company adorned the barn with rustic sunflowers and tall grasses.
  • The Photo Shop in Pittsfield donated stunning poster-size prints of Charley to hang on the barn walls.
  • At the last minute, Pine Cone Hill came through with 80 yards of much-needed fabric.
  • Netkaleidoscope/Great Greeting Cards and Masterpiece Printing designed and printed the beautiful invitations for free.
  • Classical Tent provided tables, chairs, linens, glasses and plates at a ridculously low price.
  • Home Depot loaned us sawhorses, on which we displayed the jewelry.
  • Paul Rich and Sons Furniture delivered the sawhorses at no charge.
  • Computer Whiz Matt Mervis hooked us up with the technology to project photos of the live auction items.
  • And I don’t know how she did it, but Judy Usow managed all of the resgistration, bidding, and checkout without ONE foul-up.

By all accounts, the night was a huge success. Guests were treated to terrific deals on jewelry, and Charley’s Fund raised a great deal of money. Despite this good karma, as always in our lives, there was an undertow of sadness tugging at our hearts. Posing for a photo or hugging a friend hello, I would get carried away with the glamour of it all and then suddenly realize, “This is not a wedding.” But it was a party, and we were there — and we smiled, ate hors d’ouvres, chatted with guests, and helped move the research forward.

In fact, the evening’s proceeds fully paid for a mouse model that is being created for Charley’s Fund. The mouse will mimic Charley’s genetic mutation. Scientists will use this mouse to test exon skipping. Because the mouse will have Charley’s exact genetic mutation, it will be an important predictor of whether exon skipping can work on Charley and other boys with exon 51 deletion, a genetic mutation that causes Duchenne Muscular Dystrophy. We recently received this e-mail from the researcher who is creating the mouse:

Hello Benjamin,

I hadn’t heard back from you about your discussions with the legal folks here. That’s not really why I am writing you. I took the liberty of checking out the web-page for Charley’s Fund and was quite touched by your predicament. I have 2 boys of my own and, given the situation, it struck me quite hard that time is not on our side if we are to help him. I don’t care about the funds at this point. We will work that out. I will waste no more time. For that reason, I initiated the project today. I have assigned my best technician to make the gene targeting vector (though we will all pitch in). After I described the problem to him, he was overwhelmed with honor at being asked to pursue such a noble endeavor. I can personally assure you that, of everyone I know, he is the person who can make this vector as fast as is humanly possible. It is a fairly complicated gene modification to make… Today, I designed the vector and we are on the move. I will do whatever I can to get this done. Anyway, I just wanted to let you know that there will be no more delays. Charley and many other children are too important for me to wait any longer.

Take care,

Randy

And so I continue my practice of always ending on a positive note.