Survivor. No, not the television show, as I wish were the case. A young Jewish woman and personal friend, Amy Farber, is a real survivor who was diagnosed with LAM (short for the fatal lung disease lymphangioleiomyomatosis) a few years ago, when she was 35.
I met Amy Farber last year at my high school. She delivered an impassioned speech in which she revealed that there was no cure or treatment for her terminal disease.
Amy and I had a lot in common, as we grew up in the same community. Her plight made me realize the importance of what the rabbis have been telling me about for years: tikkun olam, my responsibility to help repair the world, and that even as one person, I can make a difference.
I felt compelled to help this brilliant and vibrant Jewish woman in her quest to stay alive. I just could not ignore her desperate need. I figured my best opportunity to raise awareness to the public, as well as funds to support her cause, was through my synagogue’s MATCH program.
I am a member of the board of directors of MATCH: Money and Teenagers Creating Hope, a teen philanthropy foundation of Temple Emanuel of Beverly Hills, made up of high school students. MATCH was started through an anonymous gift of $250,000, with slightly more than $10,000 of interest generated per year. By studying Jewish traditions surrounding tzedakah, meeting with philanthropists, learning how to research nonprofit organizations, making site visits, and meeting with representatives from organizations, our board chooses how that $10,000 should be donated. It is a hands-on experience of philanthropy that helps us prepare for a life-long commitment to tzedakah and tikkun olam.
I researched the LAM Treatment Alliance (LTA), an organization Amy founded to raise awareness and money to find a cure for LAM, and presented my findings to my board. Our board decided to allocate $2,000 to further her efforts.
Amy had just completed a doctorate and had been looking forward to starting a family when her ailment struck. The doctor offered no help other than vitamins. Amy found the lack of assistance to be outrageous. She decided to take action against this rare disease. LAM affects thousands of women, typically in their childbearing years, as their healthy lung tissue is destroyed by cysts that ultimately suffocate them. To this day, many patients remain undiagnosed.
Amy assembled a team of Nobel Prize-caliber scholars and inspired them to move on an extraordinary fast track to seek both a treatment and cure for LAM. The LTA and its advisory board consists of members representing Boston’s Beth Israel Deaconess Medical Center, Harvard Medical School and Massachusetts Institute of Technology, to name a few. LTA has been featured in the Wall Street Journal and on “The Charlie Rose Show” and now receives global support. Since Amy founded LTA, it has raised nearly $1 million for research and awareness of this disease.
Doctors are optimistic about discovering a cure, but regrettably it may be too late for Amy.
The good news is that while LTA is researching for a cure for LAM, scientists are finding valuable insight into the treatment of breast cancer, prostate cancer, melanoma, lung cancer and diabetes.
Amy has helped establish a goal for people to help others in need of survival. Thanks to my experience with MATCH, I’ve learned that both philanthropists and survivors benefit from acts of charity.
For more information on Amy Farber and LAM, visit ” target=”_blank”>http://www.tebh.org/social_justice/index.php’match. And check out julief@jewishjournal.com.
