Swab a Cheek

Increasing Racial and Ethnic Diversity in the Bone Marrow Registry
Swab YOUR cheek –
YOU could save a life

CONTRIBUTE

YOUR contribution will be used to:

  • Register life saving donors
  • Educate donors so they are available when someone needs a match

Swab a Cheek, Save a Life’s management team is comprised of a diverse group of individuals who have joined forces to pursue one main goal: to ensure that everyone who needs a bone marrow transplant will have an equal opportunity to find a matching donor. Each of us is passionate about, and committed to, fighting racial and ethnic disparities in the area of bone marrow trans-plantation.
L-R: Sara Jane Harris, Jay Feinberg, Evie
Goldfine, Lisa Horowitz, and Donna Joe


L-R: Isabel Roman-Cogswell, Evie Goldfine
and Donna Joe

The Swab a Cheek Team

Jay Feinberg, Mentor
Evie Goldfine, Co-Founder
Lisa Horowitz, Co-Founder
Sara Jane, Co-Founder
Donna Joe, Co-Founder
Isabel Roman-Cogswell, Co-Founder


“There is nothing stronger than the heart of a volunteer. With it beats the spirit of service, generosity and compassion…and the health and well-being of our community, our country and our world.”
–Kobi Yamada

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JAY FEINBERG

In 1991, at the age of 19, Jay Feinberg was diagnosed with leukemia, and was told that he needed a bone marrow transplant to live. The doctors also told Jay that he had a less than 5 percent chance of finding a matching donor because he was Jewish. Because Jay is an only child, he was told that his best chance of finding a match was from someone who shared his same ethnic background; but at that time, Jews were severely underrepresented in the world wide registry.

Jay’s family and friends refused to accept his virtual death sentence, and immediately launched an ambitious grassroots recruitment campaign to find a match for him. Their efforts, which spanned more than 4 years, resulted in the enrollment of 60,000 new donors in the worldwide registry, and generated new perfect matches for hundreds of patients in need. But after 4 years of searching, they had yet to find a match for Jay, and Jay’s cancer was at a critical stage. His time had all but run out. Jay’s family was ending its search and preparing for the inevitable. However, one inspired young man, who had watched the efforts of Jay’s bone marrow drives save his best friend’s life, decided to run one last drive for him.

In May 1995, the very last donor tested at this very last drive turned out to be Jay’s miracle match. Thanks to a perfect stranger, Becky, and a determined young man, who believed in the “power of one”, a match was found which saved Jay’s life. And it is because of a stranger’s generosity and bravery, that in the midst of his transplant, Jay decided to devote his life to helping others who need transplants. Today, through his work as founder of the Gift of Life Foundation, Jay is responsible for enrolling more than 190,000 new donors in the world wide registry, and changing the odds for Jewish patients seeking bone marrow transplants. Now, because of Jay efforts, Jewish patients have a greater than 70% chance of finding a matching donor.

EVIE GOLDFINE

In 2000, at the age of 53, Evie was diagnosed with stage 4 lymphoma. She was widowed, with no siblings. She will never forget the day that her daughter asked, ”Who will I go to for advice; who will take care of me?” Unfortunately, Evie had no good answer; because no one can take the place of a parent. If she died, her two children would have been alone without parents. Modern medicine kept her alive for 5 years with aggressive chemotherapy; and in 2005, Evie’s life was saved by a transplant from a complete stranger who had enrolled in the Gift of Life registry. Because she had a successful transplant, she was able to witness the marriage of her daughter and the birth of her 3 grandchildren.

In 2009, Evie helped her long-time friend, Lisa Horowitz, through her bone marrow transplant and year-long recovery, by providing much needed support and encouragement. Evie has also been a long-time supporter of the Gift of Life Foundation (GOL), and has even served as a courier for GOL, transporting bone marrow as far as Israel. Evie embraces life with an infectious spirit that is transmitted in just one smile, and has embraced Swab a Cheek, Save a Life’s mission with enthusiasm and dogged determination.

Evie Goldfine was a member of the founding team, Chief Administrative Officer, and a member of the Board of Directors of Omnipoint Corporation. Since retiring from Omnipoint in 2000, Ms. Goldfine has been an active philanthropist, and has thrown herself passionately into the fight to cure cancer. She has established scientific grants supporting research, and meets regularly with the recipients of these grants to gauge progress and keep up to date on the issues. She is a former Board Member of the Lymphoma Research Foundation and one of the founders and former Board Member of the Massachusetts Chapter of the Lymphoma Research Foundation. She is a current member of the Hematological Committee at Dana Farber Cancer Institute.

LISA HOROWITZ

In 2002, when Lisa heard the words “you have cancer”, the bottom dropped out of her world. She was 37 years old, married, with a 6 month old baby. Even with the support of her sister, she was inconsolable and racked with the fear that she would not live to raise her child. For 6 years, Lisa endured aggressive chemotherapy, but eventually the doctors told her that her only chance of survival was a bone marrow transplant. Her doctor also told her, “15 years ago, you would have had little or no chance of find a match; but because you are Jewish (and the work of the Gift of Life Foundation), you have a great chance.” Then the doctor turned to her Chinese American husband, and told him that if it were he who needed a transplant, he would have virtually no chance of finding a match, because Asians were (and still are) severely underrepresented in the world wide registry. To say nothing, it was a daunting reality; a reality that her own child potentially faced.

Lisa was fortunate to find a perfect match in the registry. But she started to think, “what if I hadn’t been so lucky”? But what if she was African American, or Latino, or Asian, and her chances of finding a match were less than the odds of flipping “tails” in a coin toss? In the year following her transplant, in which she had to spend much of her time isolated in her home, Lisa had time to contemplate that reality and everything that was meaningful and worthwhile in one’s life. She came to the simple conclusion that she would try to do something about the racial and ethnic disparities in the bone marrow registry, by “paying it forward”.

Lisa Horowitz is a licensed clinical psychologist currently working with medical patients (mostly cancer patients) in a local hospital. She is trained as a Health Services Researcher, and is dedicated to public health research. She has a passion for fighting racial disparities in healthcare, and in 2003 was invited to participate as part of the Hospital Working Group on the Mayor’s Task Force to Eliminate Health Disparities in Boston. As a transplant recipient, Dr. Horowitz has a unique perspective that has greatly influenced her career as a health care provider and a public health researcher. Lisa brings her expertise in impacting public health, working comfortably with people from diverse backgrounds, analyzing and managing data and a deep passion to help those in need of a bone marrow transplant.

SARA JANE HARRIS

Sara Jane first met Lisa Horowitz when their daughters attended the same kindergarten class at Sidwell Friends School, in Washington, DC. During Lisa’s lengthy transplant recovery, Sara Jane was there supporting Lisa every step of the way; from cooking dinners, to making sure Lisa had just the right amount of obscene desserts stacked in the freezer. Sara Jane knows how to “do” and to step up and support, even if the news isn't so good.

Luckily for Swab a Cheek, Save a Life, Sara Jane is a charismatic leader in community service, and has the energy of 3 or 4 people when it comes to seeing a project through. Professionally trained in education, Sara Jane is a committed community service coordinator with a wide range of professional and philanthropic leadership experience. Sara Jane’s professional life and diverse community involvement merged when she joined the faculty at Sidwell Friends Middle School as a drama teacher (1993-1995) and served on the Faculty Multicultural and Diversity Committees. Quick to engage herself and her students in community work outside of the school, Ms. Harris teamed her students with the Children’s National Medical Center’s Burgess Adolescent Clinic and formed the group, “Teens Against the Spread of AIDS (TASA).” TASA created and developed interactive dramatic presentations to educate students at risk for HIV and AIDS. The group was granted a Mayoral Award in 1995. From 1995 until 1997, Sara Jane developed and held the faculty position of Community Service Coordinator at the Cambridge Friends School in Boston, Massachusetts. She created the service learning curriculum and facilitated service projects for grades Pre-K through 8th. Her work necessitated the development of global and domestic community partnerships, many of which targeted underserved populations.

Since 1997 until the present, Ms. Harris has reached into her community to promote cultural diversity and to raise funds for projects such as the Washington Tennis and Education Foundation, Sidwell Friends School and Global Grandparenting, among many others.

DONNA JOE

Donna first met Evie, Lisa and Sara Jane, in May 2009, at an unlikely meeting - unlikely because the meeting was held by a parent group (Parents of Black Students – PBS) at the high school of Donna’s oldest daughter, Danielle. More to the point, it was unlikely because none of the three women “visiting” the meeting were Black. Nonetheless, this group of three had asked to meet with the PBS to discuss a horrifying, yet widely unknown, problem affecting the Black community.

Donna was struck by two things. First, all three women were Jewish; and to her experience, none had any significant ties to the Sidwell Friends School Black community. Yet, all three had come to that unlikely meeting in an effort to reach out to the Black community to ensure that Black patients would have a real chance at survival, in the event of a blood cancer diagnosis. To coin a phrase, they have “no dog in the fight” and no (racial) stake in helping the Black community in this way. All three could have restricted their efforts to the Gift of Life Foundation (GOL), particularly since Evie and Lisa had received live-saving transplants as a result of GOL. But instead, these three women were there to help Donna’s “community”, as opposed to their own. In fact, Lisa, having received a marrow transplant some 6 months earlier, risked leaving her house and addressed the PBS with hands sheathed in plastic gloves and a surgical mask over her face. That’s how important Swab a Cheek, Save a Life’s mission was to her. For Donna, it was all but impossible to ignore the passion with which Evie, Lisa and Sara Jane were pursuing their goal. Donna could not just sit there and do nothing to help.

Even more powerful and affecting for Donna, was an anecdote told by Evie that afternoon. In short, Evie recounted a true story about a woman in her 40’s who was invited to the bat mitzvah of a girl that was essentially a stranger to her. As it turns out, this 40ish woman was treated like a bona fide celebrity by the young girl’s family and friends who attended the ceremony/celebration. Why? Because years earlier, this 40ish woman had donated the bone marrow that saved the young girl’s life; and but for that selfless act, there would have been no bat mitzvah. That simple story stopped Donna cold, and moved her to tears. With two young daughters of her own, it became painfully clear to Donna how important Swab a Cheek, Save a Life’s mission was to her own personal circumstances. The simple truth was that if one of her own daughters were to develop a blood cancer, they would have less than an 18% chance of finding a match; and what parent in their right mind could tolerate those odds. So in addition to swabbing in that day, Donna made a commitment to herself and to the three wonderful women who introduced her to Swab a Cheek, Save a Life’s mission, to support the organization any way she could.

Donna Joe, an attorney by profession, has long been involved in community service by serving in various capacities on the PTAs at her daughters’ schools, and coaching recreational and AAU basketball (along with her husband, Darryl) for several years. Since 2006, Donna has also been an active member of the Board of Directors of My Own Place, Inc., a non-profit organization which helps persons with intellectual and developmental disabilities learn life skills which enable them to live independently and with dignity. She has served as the Board’s President since September 2008.

ISABEL ROMAN-COGSWELL

Isabel’s daughter, Sydney also attends the same high school as Donna’s daughter, and was present at the May 2009 Parents of Black Students meeting where Evie, Lisa and Sara Jane spoke. During the meeting, Isabel was also struck by the gravity of the issue of underrepresentation of people of color in the bone marrow registry. Swab a Cheek, Save a Life’s mission to increase these numbers made a personal impact on Isabel as well, and compelled her to join them in their quest.

SWAB A CHEEK, SAVE A LIFE

c/o Gift of Life Bone Marrow Foundation Development Office 800 Yamato Road, Suite #101 Boca Raton, Florida 33431 Phone: 561.982.2919