December update
We are just back from a weekend in New York City, where hundreds of shoppers streamed into my sister Kathe’s apartment to buy lingerie, fur coats, jewelry, hand bags and other holiday gift items. The vendors generously donated 20-40% of the proceeds to Charley’s Fund, and we ended the day with $35,000!
The “Shop like a Diva� event came fresh on the heels of our “Wish I Could� auction, a terrific evening held in the Berkshires on November 30th. We debuted the beautiful new upstairs function room at Spice, a restaurant in Pittsfield, MA. Owners Larry Rosenthal and Joyce Bernstein donated the space and the delectable desserts. Local radio host Alan Chartock enlivened the evening with his motivational rhetoric as the guest auctioneer. Who else could sell two quarts of ice cream for a thousand dollars?!
Proceeds from these two fundraisers will be sent to the University of Colorado, where. Dr. Brian Tseng is conducting a study of Polaxymer 407. This compound, which is found in toothpaste (so we know it is safe), has been shown to delay the progression of DMD in a mouse model. Dr. Tseng is conducting a study to see if the compound can be developed as a therapy for use in children with the disease. Charley’s Fund teamed up with three other family foundations to underwrite the research project. Nine months from now, Dr. Tseng will provide us with a report detailing the results if his research. We will share the information with you at that time. If the news is positive, we will need more money to push the research to the next stage.
In other research news, the DMD eTank is moving full-steam ahead. The team has drafted three challenges to post on a website that attracts scientists from all around the world, www.InnoCentive.com. Visitors to InnoCentive’s website can solve challenges for a fee. We are proud to be taking advantage of this cutting-edge technology, and we are hopeful that a scientist (or scientists) out there will step forward to help us solve some of the problems that are stymieing the DMD research community.
In between the two fundraisers, Benjy and I stole away to Montego Bay, Jamaica. It was our first kid-free vacation in eight years! It was heavenly to lie on the gorgeous beach, where our biggest concern was whether to choose the pina colada or the strawberry daiquiri. Thank God for grandparents, who heroically took on Sammy, Charley, and Maisy for four days while Benjy and I recuperated from a year jam-packed with Charley’s Fund activity and geared up for 2007, which promises to be a pivotal year for all children with Duchenne Muscular Dystrophy.
Our New Year’s resolution is to continue to push as hard as we can for a treatment or cure for DMD. This of course would be the ultimate gift to our family and all families stricken by this hideous disease. In the meantime, this year for Hanukkah we took Charley and his siblings to the Build-a-Bear Workshop in Manhattan. Charley’s new friend “Dimples,� dressed in a New England Patriots uniform complete with cleats and mini-football, has not left his side. Thank you so much for standing by us as we do everything we possibly can to keep Charley throwing that football around for many years to come.
Wishing you a very, very happy holiday, and many thanks to all of you who have given so generously this year.