Spotlight On

Mission:
SHARE is a not-for-profit organization that offers survivor-led support to women with breast or ovarian cancer, their families and friends. SHARE's unique support model assures that no one need face breast or ovarian cancer alone. Drawing on their own experiences, cancer survivors help others address both the emotional and practical issues that arise from a cancer diagnosis. Women diagnosed with breast or ovarian cancer are frightened about the surgery they face, the treatments they'll need, their changed lives post-treatment, and whether they'll survive. Often, it is after the surgery and treatment that the larger fears set in- how do you move forward when you've been told that you have a disease that can take your life; a disease that you can never be sure won't come back? At SHARE, they can face those fears with other women who are or have been in a similar situation and therefore understand the issues in a way others cannot.

SHARE's services include multi-lingual hotlines, support groups, wellness and educational forums and advocacy activities. All services are free of charge. SHARE empowers individuals and communities to advocate for increased access to quality care, improved treatment modalities, greater funding for research, with an emphasis on improving quality of life.

Background:
When SHARE began almost thirty years ago, a terrible silence surrounded a diagnosis of breast cancer despite advances in other areas of women's health. The same could be said of ovarian cancer, a disease that offered even less hope until recently. SHARE provided an opportunity for women to break that silence by offering emotional support, information, and advocacy activities.

SHARE began as a group of volunteers who organized a hotline and support groups and offered a handful of programs and workshops for women affected by cancer. As the breast and then ovarian cancer movements grew, more programs were needed to service a growing patient population. Paid staff were slowly brought into the organization beginning in 1992 and its first full-time paid Executive Director was brought on in 1993. While SHARE'S services continue to be staffed by a strong volunteer force, SHARE currently employs 11 full or part-time paid staff.

SHARE's proud heritage of activism goes back to its earliest years, when members of the original founding support group picketed a department store to protest the firing of a woman who had been diagnosed with breast cancer. Advocacy activities really took hold within SHARE in the 90's when SHARE became a founding board member of the newly formed National Breast Cancer Coalition (NBCC) and later of the Ovarian Cancer National Alliance (OCNA) and the New York State Breast Cancer Network (NYSBCN).

Today, SHARE supports over 20,000 women, families and friends affected by breast or ovarian cancer. More than 65% of the women we serve are from low to moderate-income groups. Special efforts are made to reach out to low-income women with limited access to quality health care and/or cultural pressures that encourage silence about these diseases. When SHARE began, there were very few, if any programs that addressed breast cancer issues in the Spanish speaking communities of New York City. Today, LatinaShare provides information, a hotline, support groups and educational programs-all in Spanish. Support groups and wellness workshops are also available to women throughout New York City in Harlem, throughout Manhattan, Brooklyn, The Bronx, Queens, Staten Island and sites in New Jersey.

Women come to SHARE at all stages of their involvement with breast or ovarian cancer- from diagnosis through post-treatment, both as participants as well as through our volunteer program. Whatever the level of involvement, SHARE women and men feel less isolated, better informed as health care consumers, and more empowered.

SHARE stays on the cutting edge of issues related to breast and ovarian cancer in order to serve as a strong resource for those who access our services and an active participant in the controversies engendered by changes in scientific knowledge.

SHARE has become an important resource for other organizations as well as for the medical and research communities. The organization has served as a catalyst and has provided technical support to groups of survivors interested in developing a self-help model of support, education and advocacy. Internationally, SHARE has worked with groups in Israel, the Czech Republic, Poland, the Ukraine and Bosnia/Herzegovina.

Current Programs:

• Hotline - The SHARE Hotline Program, comprised of a Breast, Ovarian, and Latina Hotline, is staffed by survivor volunteers and provides hope and support to thousands of callers. Hotline volunteers offer encouragement and provide resources for callers to obtain further information. SHARE's hotline serves as a gateway to SHARE support groups and other programs. SHARE also has a toll-free number that enables people nationally and internationally to have inexpensive access to SHARE's hotline. More than 6,000 callers a year receive help seven days a week, in thirteen languages.
• Peer Support Groups - Throughout New York City, SHARE provides over 30 different support groups monthly for women affected by breast or ovarian cancer. Individual group topics include: groups for those newly-diagnosed; for young women; in-treatment and post- treatment groups; breast cancer groups for survivors growing older; for mothers and daughters; for couples; a partner's group; a children's group; one for parents of young children; and for women with metastatic breast cancer. All support groups are led by survivors.
• Ovarian Cancer Support - SHARE's Ovarian Cancer Program originated in 1991 with a small group of ovarian cancer survivors. The program has grown since then, in part because few other support programs exist for women at high risk or diagnosed with ovarian cancer. Creating public awareness about early detection of the disease through outreach and education activities for both the general public as well as the medical community has been a vital part of the program.
• LatinaSHARE Program - LatinaSHARE provides a Spanish speaking, survivor-led hotline, support groups, hospital-based survivor patient navigator programs; community education; and advocacy activities. LatinaSHARE was designed as a community-based program to enable the Spanish speaking community to have access to services where they live and in the hospital institutions they visit. The challenge for LatinaSHARE has been to aid Latina survivors in breaking the silence around these diseases and to adapt SHARE's self-help model to the needs of the Latina community.
• Wellness - SHARE's wellness programs range from those that focus specifically on breast or ovarian cancer and others that target more general areas of women's health. Wellness programs enable participants to integrate complementary and alternative health-related practices into their lifestyles. Programs designed to engage the body, mind and spirit include: yoga, meditation, nutrition/healthy cooking, warm water movement, Qigong, fatigue management, and holistic approaches to health and healing.
• Advocacy - SHARE encourages and empowers survivors, their friends and families to take an active role in advocating for increased access to quality care, improved treatment modalities, greater funding for research, an emphasis on quality of life issues and the importance of the patient perspective. SHARE has had a strong presence at all national scientific meetings and conferences. SHARE women and men have participated in great numbers at the annual advocacy conferences for both breast and ovarian cancer, and walked the halls of Congress and the State Capitol to raise the consciousness and information level of their representatives.

Funding Needs:
SHARE offers its support services and programs to all participants free of charge. Funding is needed to expand the reach of our multi-lingual hotline, which has experienced an increase in call volume, especially from underserved areas around the country and from women dealing with end-of-life issues and to provide additional support services and resources for women diagnosed with ovarian cancer. SHARE is also eager to expand its reach to women living in underserved communities throughout New York City through its hospital-based Survivor Patient Navigator program. Over the past four years the program has served more than 1000 women diagnosed with breast cancer, many of whom are recent immigrants.

Every month, the "Spotlight On" highlights the activities of a different 501(c)3 nonprofit organization located in the tri-state region (NY, NJ, or CT). The selection of organizations for the "Spotlight On" is based on criteria such as programmatic interests, geographic focus, and size, to ensure the broadest possible representation of the region's nonprofit sector.

If you'd like to see your NPO in the "Spotlight," please use this submission form to send us a profile of your organization. Or e-mail a description of your organization, following the above format, to nyweb@foundationcenter.org, with "Spotlight Submission" in the subject line.