We’ve just arrived home from a phenomenal two weeks in Israel. Charley’s cousin Xander became a bar-mitzvah at the Western Wall. His generous parents invited us along for a fabulous tour of Jerusalem and its environs. Charley’s favorite highlight was floating around in the Dead Sea and covering himself in its legendary therapeutic mud. A dare-devil jeep ride through the Golan Heights and our visit to a secret underground bullet factory were close seconds. These richly historic adventures were balanced by less intellectual endeavors, like taste-testing falafel from every stand we encountered and horsing around in the back of the tour bus with a gaggle of siblings and cousins.
Throughout the trip, that cruel DMD dichotomy was ever-present. On the one hand, there was the sadness and fear each time we arrived at a site requiring physical agility. How could we ever again experience this camel ride or this cave crawl? If we come back in two years will Charley be able to get around at all? While cousins and friends happily discussed which sites they will see on their next visit, we were left wondering if we could ever again navigate the narrow paths and uncountable stone steps.
On the other hand, I doubt anyone on earth feels as deep a sense of joy and wonder and gratefulness that I felt almost every minute of the trip. Certain mundane moments stand out in my mind as almost impossibly beautiful:
standing with the kids on the street in Tel Aviv devouring a fresh mound of sweet strawberries that we had just purchased (and bargained for) at the Carmel market
tears streaming down our faces from laughing so hard when Maisy transformed “Boker Tov” (Hebrew for Good Morning) into “Booger Tov”
hooting and clapping during the apres-dinner entertainment at a Moroccan restaurant, which was an elaborate bellydancing show performed by all the younger cousins
Thanks to my incredible family who sponsored this trip, we came home with a brainful of beautiful memories that will forever brighten our days.
The two weeks away provided a crucial mental break for Benjy and me. Learning about the complicated history of the Middle East and haggling over shekels were rejuvenating diversions from our usual work. We are now back in the saddle, raising money and expediting research.
The vacation came at a crucial time, as we now need all the energy we can muster to raise the money we need during these challenging economic times. The uncertainty of the economy has caused many of our donors to be extra cautious this year, cutting back on expenses that are not absolutely necessary. It is our job to convince people that keeping the medical research on the fast track is a necessary expense that we cannot live without. In fact our own son Charley and thousands of other little boys literally cannot live without it.
Thankfully, several supporters have recently stepped up to the plate in a very big way to help us during these trying times. This week we received a $100,000 pledge from a donor who learned about us through the film Darius Goes West. Another donor presented us with a challenge grant. She will match up to $100,000 raised by May 11 — Mother’s Day – in honor of the tireless efforts of all moms of DMD boys. Please consider making a donation toward this goal. To be presented with $200,000 on May 11th would be the most incredible gift I could imagine this year.
The fact that we need money is actually a good sign. All of the research we fund is paid in increments based on milestone achievement. We do not pay out our grants and investments in a single lump sum. Instead we pay out funds when we receive a satisfactory progress report from the scientist doing the research. This enables us to cease funding a project if a researcher hits an insurmountable roadblock.
Upon our return we faced news of milestones reached by several of our key researchers, including AVI Biopharma, Dr. Dean Burkin of University of Nevada at Reno, and Dr. James Ervasti at the University of Minnesota. That brings me to the positive note on which I must always end, a writing technique that has mushroomed into a full-fledged superstition. Happy spring, and please tell everyone you know about our Mother’s Day deadline to maximize the $100,000 matching grant!