Icla Foundation Marks 15 Years

In October of 1989 my family arrived on Roosevelt Island from Brazil with the hope of saving the life of my 11-year-old sister, Icla. She had been diagnosed with chronic myelogenous leukemia.

Icla's only hope for a cure was a bone-marrow transplant. No match was found within our family; that meant finding a match from an unrelated donor.

On Roosevelt Island, our family found a community ready to help. Residents, led by Pat Schwartzberg, Ronald Vass, and Dr. Lawrence Itskowitch, mounted a 15-day fundraising campaign. Love Thy Neighbor worked to raise over $45,000 for Icla's transplant while a search for a match continued.

But months of searching for a donor match failed. My sister died. I was 15.

In her last few weeks of life, Icla wrote a note saying that all she wanted was to be cured of leukemia and to help people in need of bone-marrow transplants. In response, the Icla da Silva Foundation was founded. Today, after 15 years, it lives on, the embodiment of Icla's energy and enthusiasm.

The Icla da Silva Foundation started its activities in 1992. identifying the critical need for expanding the nation's pool of potential bone-marrow donors. A marrow transplant is often the only effective way to save the life of patients suffering with leukemia, lymphoma, and many other life-threatening diseases.

Matches for bone-marrow transplants are very particular, and often hard to find. Ethnicity can be a key to finding the right match. "Finding a needle in a haystack" doesn't even begin to describe the difficulty.

But over the course of the past 15 years, the Foundation has recruited more than 75,000 potential donors, and has become the largest bone-marrow recruitment center in the United States. As a constituent donor-recruitment organization of the National Marrow Donor Program, the Foundation was given a recruitment goal of 6,700 donors in 2006; actual new donors registered by the Foundation numbered 10,345. In 2007, the number of new donors will reach over 14,000.

The Foundation works with a population that is difficult to reach, educating and registering donors, but also providing a range of services to pediatric patients and their families at the most stressful period in their lives. The Foundation has achieved certified matches of 75 unrelated donors for leukemia patients, and effected an additional 250 transplants from relatives who would not otherwise have known that they might be a match, or might not know how to access the medical care delivery system.

In 2006, the Foundation provided services to over 100 families, including education about the disease and the range of treatment options, expedited access to premier medical facilities regardless of the ability to pay, and psycho-social support from the point of diagnosis through periods of hospitalization and post-release care.

For me, Icla's suffering and my family's experience made clear the importance of the mission the Foundation took on - to minimize the pain and suffering of patients and their families, but most importantly, finding and providing a compatible donor. That is the gift of life.

Today, the Icla da Silva Foundation continues to receive the support of many Roosevelt Islanders. As a resident, I am proud to say that the support of Island residents helped make the Foundation visible world wide, internationally recognized for life-saving work.

Since the Foundation's patient base is drawn from all sectors of the United States and Central and South America, its staff assists in arranging transportation to the medical care site, securing housing, and providing patient advocacy within the complex medical care system. About 90 percent of the Foundation's patient base consists of the economically disadvantaged, from both the United States and other nations. For that reason, the Foundation provides grants, judiciously administered, to the neediest families. This can involve a need for warm clothing for families from a warm climate, for example. All such services are provided by the small Foundation staff with the help of culturally sensitive bilingual volunteers.

The organization is celebrating 15 years of saving lives on Wednesday, October 17, 2007, at New York's most prestigious and spectacular landmark restaurant, Tavern on the Green, located at Central Park West at 67th Street in Manhattan. Tickets and sponsorship opportunities are still available. Please contact me, Airam da Silva, at 212-593-0474 or by e-mail at Airam@icla.org for more information on the event, as well as how to get involved as a volunteer or supporter. Our website is at www.icla.org and we'll answer questions directed to info@icla.org.

The October 17 evening will begin with a cocktail reception with live music and a silent auction, followed by dinner and dancing. We anticipate that the highlight of the evening will be a first-time meeting between a former leukemia patient, who received assistance from the Foundation, and his bone-marrow donor, who was identified and recruited by the Foundation.