by Ross Bloom
A group of us from the Boston-Haifa Connection’s Young Leaders Committee recently went to see “Beating Time,” one of the films in this year’s Boston Jewish Film Festival. The film, which follows the story of Avi Kremer and others in their battle to find a cure for ALS, or Lou Gehrig’s Disease, had a personal meaning for all of us there. Avi is a friend of one of the chairs of the Young Leaders’ Committee in Haifa, Karni Chagal, and she made sure we knew about the opportunity to see the documentary and hear from Avi.
Avi’s story is an amazing one. Originally from Haifa, Avi had just begun his studies at Harvard Business School when he was diagnosed with ALS. ALS is a progressive disease that gradually causes patients to lose the ability to use muscles across their body, and most patients die within several years of their diagnosis. Avi has lived well past the prognosis he was given and has created an innovative foundation, Prize4Life, to find a cure for ALS. Because the disease’s origin is unknown, and the fact that ALS affects fewer people relative to other diseases, there have been few incentives to pursue research into cures for ALS. Avi’s foundation creates an incentive by funding innovations in ALS research with the ultimate goal of moving toward a cure.
The audience had the privilege of hearing from Avi and others involved with the film at the end of the screening. I had met Avi this past summer when I was in Haifa, so it was particularly meaningful for me to see him again here in Boston. The progression of the disease has made him unable to speak or to move his arms, so he communicates by typing out words on a screen using a reflective light off his forehead. However, despite the difficulty of this means of communication, he still comes across as an utterly inspiring innovator through his words.
There is still work to be done, however, in finding the cure for ALS. One step we can all take is to go to Avi’s foundation’s website, www.prize4life.org, to learn more about ALS and to see how we can help.
You can also watch a trailer for the film below and visit the Beating Time site.
Ross Bloom is a member of the Boston-Haifa Connection Young Leaders Committee.