Big Money from a Small Person

By January 24, 2006October 30th, 2016Tracy's Blog

Big Money from a Small Person

Several months ago, I received my nephew’s bar-mitzvah invitation in the mail. Among the usual enclosures, such as a card inviting us to a kids’ nighttime party and a response envelope, was a hand written card with the following note:

Instead of gifts for my bar mitzvah I would like people to give money to a charity called Charley’s Fund. Charley, my cousin, has Duchenne Muscular Dystrophy and Charley’s Fund is raising money to help find a cure. This disease makes children’s muscles get weaker and weaker and eventually stop working. I feel very lucky to be able to stand at the bema on my bar mitzvah day. My cousin Charley won’t have the same privilege unless a cure is found. I want him to stand at the bema like me. Please help me make this happen. Thanks, Jeremy

This note precipitated an influx of donations. Many of the checks were accompanied by letters expressing pride and admiration that a 13-year-old boy would willingly forfeit what was sure to have been a bonanza of cash and electronic goodies. To date, donations in honor of Jeremy’s bar-mitzvah total just over $56,400!!!! Thank you, Jeremy, for purchasing the two machines necessary for our exon skipping project in the Netherlands. You got some electronics after all, although I don’t think a spectophotometer and an FPLC (an apparatus to purify and/or desalt antisense oligonucleotides) are the gadgets most kids envision getting as bar-mitzvah gifts.

At the celebration this past weekend, it was an overwhelming sensation to look out at a sea of faces and know that literally every person there has supported Charley’s Fund. Many of Jeremy’s classmates thoughtfully donated in increments of $18 to imbue the gift with luck (in Hebrew, the number 18 symbolizes life). Cousins and friends gave well beyond what I imagine must be their usual allotment for bar-mitzvah gifts. One couple was so moved by Jeremy’s note that they gave $5,000 to become Founding Supporters in honor of this occasion.

This incredible fundraising push was truly a group effort. It took Jeremy’s leadership and inspiration, the generosity and enthusiasm of his guests, and the support and guidance of his family to make it happen. Thank you to everyone who helped inculcate Jeremy into the culture of mitzvah. Together, we raised significant funds for medical research that could help Charley stand tall and proud at his own bar-mitzvah when he turns 13.

Speaking of the research, the latest update from the Netherlands is very encouraging. The Dutch research team we are funding was just awarded “orphan drug status