Never Lose HopeAug 01, 2019 ● By Allie Spletter
The Icla da Silva Foundation’s focus lies in helping members for minority communities become educated in ways they can help others and potentially save lives. The Be The Match Registry® services the National Marrow Donor Program in the U.S. where almost 20 million people are registered to be potential blood, stem cell or bone marrow donors. The Icla da Silva Foundation is the largest recruitment center for the Be The Match Registry in the U.S. It recruits more than 38,000 new potential bone marrow donors every year, with a strong focus on minority communities. The foundation was established in 1992, in memory of a 13-year-old Brazilian girl, Icla da Silva. After two years of fighting leukemia, Icla passed away in New York City, where she ventured hoping to get the life-saving treatment of a bone marrow transplant. The young girl never found a matching donor. With offices across the U.S. and Puerto Rico, the foundation is continuously expanding its efforts in providing assistance and hope to thousands of families all over the world.
Community engagement representative Vanessa Ibarra explains, “Every three minutes someone is diagnosed with a blood cancer, and every nine minutes someone loses their life. 70 percent of patients do not find a fully-matched donor in their family, and they ultimately depend on Be The Match and recruitment centers like the Icla da Silva Foundation to find an unrelated donor.”
Compatibility for donation is based on human leukocyte antigen tissue typing – proteins or markers that help a person’s immune system recognize what cells belong to them. Because genetic markers used in matching are inherited, donors are most likely to match someone who shares the same ethnic background. “Unfortunately, minorities are underrepresented on the registry making it much more difficult to find a life-saving donor. Hispanics account for only seven percent of the 19 million registered donors in the U.S. and African Americans make up only four percent of the Be The Match Registry,” Ms. Ibarra says.
Those who join the registry are committing to saving a life if they ever match a person in need of a life-saving transplant. “It is very difficult to match. Only about one in 430 go on to donate. There are two methods of donation. About 77 percent of the time, a patient’s doctor requests a peripheral blood stem cell donation, a non-surgical, outpatient procedure similar to donating platelets or plasma. About 23 percent of the time, a patient’s doctor requests marrow, a surgical, outpatient procedure that takes place at a hospital,” Ms. Ibarra explains.
Frisco resident and cancer survivor Gary Carley knows firsthand the successes of matching to someone. He shares, “I was first diagnosed with acute myeloid leukemia in August 2017 and had chemo in August, September, October and November of that year. Ultimately, the decision was made to do a bone marrow transplant. My brother was a ‘perfect’ donor match and my transplant was done December 19, 2017.”
When the decision was made to do a bone marrow transplant, his brother, son and daughter were requested to send samples to the national database. His brother won!
“I was cancer-free 30 days later. The bone marrow transplant process is such an integral step in the journey to cure leukemia for a number of patients. When I was on the transplant floor, I met so many patients who were back for another transplant try. With more registered donors, the probability of a better donor match increases,” he says.
Today, since Mr. Carley has his brother’s bone marrow, “it means the blood being produced in me is his too,” he shares. “If I leave blood anywhere, and it is checked, the DNA comes back as my brother’s, who lives in Honolulu. I ceased to exist in the blood and DNA world. I also have his hair. After I lost mine, when it grew back, it was his color, which was considerably darker than mine.”
Mr. Carley was cancer-free for one year when, after one of his weekly blood tests, he was told he had leukemia again. This time, it was a different type, not a recurrence of his earlier diagnosis. As medicine had progressed since his initial diagnosis, Mr. Carley started taking a new cancer medicine January 2019 that was not available in 2017, which eradicated the cancer cells in his blood system and bone marrow in two months. “I have been cancer-free for a second time since March 2019 and I am currently doing fine and feel great,” he shares.
Mr. Carley has been fortunate to be able to continue working and has attended most of the board and committee meetings for the entities he does volunteer work for during these last two years. He currently serves on the boards for the Economic Development Corporation, Frisco Family Services, the Frisco Education Foundation and Medical City Hospital Plano/Frisco.
Given the progression of many types of cancer, more young people of diverse racial and ethnic heritage are needed to help patients searching for a match. People between the ages of 18 and 44 are most urgently needed since transplant doctors, more than 86 percent of the time, request them, and research shows that these donors provide the greatest chance for transplant success. “The Dallas/Fort Worth area is very diverse,” Ms. Ibarra shares. “We have an incredible opportunity to help patients like David Mojia, a 15-year old boy with aplastic anemia, and Dallas Police senior corporal David Frykholm, who is battling leukemia. He survived prostate cancer a few years back and again is in the battle for his life.”
Frisco residents can host a bone marrow drive with the Icla da Silva Foundation. It can be at a place of work, church, club or event. “We are able to provide education, clarify misconceptions of what it means to be on the Be The Match Registry, answer any questions people might have and swab people on site,” Ms. Ibarra explains.
The best way people can help is by sharing information about the need for more potential life-saving donors on the registry and joining it. Every year, more than 14,000 people search for a life-saving match, but cannot find one. You no longer have to be at an event to join the Be The Match Registry. Anyone between the ages of 18-44 can join by visiting join.bethematch.org/dfwcares or by texting “cure158” to 61474. It takes less than 10 minutes. All you do is answer some quick health questions and order a swab kit. It arrives in a week’s time. Once it arrives, you just swab the inside of your cheeks and send it back in the prepaid envelope.
"With social media and the registration process being digital, sharing both David and Officer Frykholm’s story can inspire thousands to join the registry,” Ms. Ibarra says.
Whether simply registering to be a potential match or going on to possibly save someone’s life, the Icla da Silva Foundation helps afford others the opportunity for life. Registering to become a donor is not the only way to help. Those seeking to serve in other capacities can host a marrow drive, volunteer, fundraise with/for the foundation, make a donation or even become a partner.
Hope is still very much alive, and the Icla da Silva Foundation continually brings and reverberates that hope to those who need it most. For more information on the Icla da Silva Foundation and how you can help, visit www.icla.org.