NATIONAL RESOURCES AND LINKS TO WEB SITES
National resources are listed in alphabetical order under the following categories:
Some Free Resources
American Cancer Society
1-510-832-7012 or 1-800-227-2345
Will send a number of free publications, including a booklet on talking to your children about cancer: "Helping Children Understand," "It Helps to Have Friends When Mom or Dad Has Cancer," "When Someone in Your Family Has Cancer."
3400 Peach Tree Road - Suite 703
Atlanta, GA 30326
Has educational materials to help children cope when a parent has cancer. Will send a videotape, "My Mom Has Breast Cancer," and a comic book, "Kemo Shark," free of charge to patients and medical professionals.
27071 Cabot Road, Suite 102
Laguna Hills, CA 92653
949-582-5443 Hotline: 1-800-899-2866 for calls outside California
Has a 24-hour hotline for children (800-899-2866), an online chatroom, and a website developed specifically for use by children who have a parent with cancer. Kids Konnected groups provide programs for youth leadership, support group meetings, social events and other outreach programs. Several summer camps are also available. Has model programs in California and throughout the nation. Check the website for details and for an up-to-date database on books about cancer and coping skills. Free.
National Cancer Institute
Will send a number of free publications, including one focusing on parents who have cancer while raising children.
About Links to Web Sites
Notice: This Site provides links and pointers to Internet sites maintained by others. Linda Blachman and the Mothers’ Living Stories Project are not responsible for the availability of any other site to which this Site links. Nor do Linda Blachman or the Mothers’ Living Stories endorse or take responsibility for the content, advertising, products or other materials made available through any other site. Under no circumstances shall Linda Blachman or the Mothers’ Living Stories Project be held responsible or liable, directly or indirectly, for any loss or damage that is caused or alleged to have been caused to you in connection with your use of, or reliance on, any content, information, goods or services available on any other site.
There are hundreds of sites on the Internet that focus on cancer and life-threatening illness, and an increasing number on the healing arts and the recording of life stories. The following are just some helpful links that we hope will provide a starting point for further research. Note: Please also check out the links found in our Bay Area Resource Guide. Most are not duplicated here.
Agencies, Information and Services Related to Life-Threatening Illness
Association of Cancer Online Resources, Inc.
“ACOR creates, produces, hosts and manages a very large number of specific online resources for cancer patients, caregivers, healthcare professionals and basic research scientists. The Oncology Support Mailing Lists Center keeps both professionals and patients abreast of breaking news stories, treatment protocols and understanding of the psychosocial effects of specific types of cancer. The Professional forums help create a better understanding between specialists involved in different sides of the biomedical mosaic.”
Association of Community Cancer Centers
“ACCC members include medical and radiation oncologists, surgeons, cancer program administrators and medical directors, senior hospital executives, practice managers, oncology nurses, oncology social workers, and cancer program data managers...all members of the cancer care team.” Primarily for service/care providers, not patients, but has extensive list of links to local community cancer centers.
Better Health Foundation
“The Better Health Foundation (BHF) is a non-profit organization dedicated to providing people with the knowledge and support services needed to make informed health decisions.”
Breast Cancer Answers (BCA)
“Our mission is to improve access to and awareness of breast cancer clinical trial information, support patients receiving treatment, and improve the quality of life of patients with breast cancer.” Offers information on treatment, links, art gallery, and personal stories.
The Breast Cancer Fund
National organization focused on identifying the causes of breast cancer and preventing the disease through education, advocacy, and outreach.
Provides “free professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved.” Has a toll-free Counseling Line.
Cancer Guide: Steve Dunn's Cancer Information Page
Offers advice on how to get and understand more information about cancer and treatment from someone who has been there.
Provides updated articles on breast cancer research.
National Coalition for Cancer Survivorship: “oldest survivor-led cancer advocacy organization in the country and a highly respected authentic voice at the federal level, advocating for quality cancer care for all Americans and empowering cancer survivors.”
Known for its week-long residential Cancer Help Program for people with cancer and the Institute for the Study of Health and Illness “that helps physicians, medical students and other health professionals to restore the principles of healing to the practice of medicine.”
An online bookstore, Compassion Books has hundreds of excellent books, audiotapes and videotapes on loss, grief, death and dying.
Courage to Choose/Courage to Care
Consultation, workshops, and educational offerings for professionals and the public related to essential conversations about end-of-life wishes.
This web site of Ira Byock, MD is filled with valuable information about death and dying, including an extensive list of books and resources.
Gilda’s Club Worldwide
Provides “meeting places where men, women and children living with cancer and their families and friends can join with others to build emotional and social support as a supplement to medical care.” Free.
Growth House, Inc.
Provides information and referral services for agencies working with death and dying issues. Located in San Francisco but maintains extensive links to nationwide resources and other information, has online bookstore and chat rooms and special section on helping children with illness and grief.
“Its purpose to is help families and children better understand the effects from cancer and chemotherapy in a parent. Its mission is the production and distribution of educational materials designed to accomplish that goal.”
Making Memories Breast Cancer Foundation
Provides opportunities for metastatic or terminal breast cancer patients to fulfill a dream or wish. Raises funds by sponsoring “Brides Against Breast Cancer” shows across the country. Donated gowns enable brides-to-be to find gowns at incredible savings while making wishes come true for women and men diagnosed with advanced breast cancer.
Mommy’s Light Lives On Fund
Mommy’s Light “brings joy and comfort to children and teens by helping them keep alive traditions and simple pleasures they shared with their mothers.” Serves children between 3 and 18 years old whose mothers are in life threatening situations or are deceased. Must live in southeastern PA, southern NJ, or northern DE. The family must directly request Mommy’s Light’s support. Also grief education.
Mothers Supporting Daughters With Breast Cancer
Free services designed to help mothers who have daughters battling breast cancer. Includes one on one support by mother volunteers who have experienced the challenges of having a daughter diagnosed with breast cancer; distributes a mother's handbook and daughter's companion brochure to provide guidance and information.
National Alliance of Breast Cancer Organizations (NABCO)
Searches “best resources on the net” for breast cancer information.
National Breast Cancer Centre (NBCC), Sydney, Australia
A one-stop site for information about breast cancer in Australia. Also covers ovarian cancer. Offers general information about risk factors, early detection, treatment, statistics, resources and research. Online email lists to join, and personal stories by those affected by breast cancer.
Online peer support for survivors, families and friends.
A comprehensive guide to cancer information provided by The University of Pennsylvania Cancer Center.
Culturally-sensitive programming for young (40 and under) Jewish women living with breast cancer. Has quality of life programs, including the “Busy Box” for young parents facing cancer.
Susan G. Komen Breast Cancer Foundation
Supports innovative research and community-based outreach, education, screening, and treatment programs around the world in the fight against breast cancer.
Through the Looking Glass
Has extensive National Resource Center on Parents with Disability.
[was Sapient Health Network] Large site containing general health information plus information about breast cancer and other life-threatening illnesses. Offers roundtable discussion areas for those living with illness as well as family members and support givers.
Website of national organization. Offers links, bibliography, on-line support group for women with breast cancer, and information about local Wellness Community centers.
Y-Me National Breast Cancer Organization
Includes breast health information, breast self-examination guidelines, a Kid's Corner, newsletters, publication ordering information, and “Ask Y-ME,” an opportunity to have questions answered quickly and confidentially. Links to many other resources. Most information also available in Spanish. Y-ME also offers 24-hour English and Spanish peer support hotlines.
Young Survival Coalition
International, non-profit network of and for young women (40 and under) living with breast cancer and their supporters. Education, advocacy, and service. National conference.
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Especially Helpful Websites for ill parents and their children:
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Recording Life Stories and Legacies / Arts & Healing
Paintings, drawings, sculpture, poetry, essays and journals created by women with breast cancer. The pieces from the show have been photographed and collected into a book which is available from the website.
Arts and Healing Network
“An international resource for anyone interested in the healing potential of art, especially environmentalists, social activists, artists, art professionals, health care practitioners, and those challenged by illness.”
Association of Personal Historians
The APH is “dedicated to helping others preserve their personal histories and life stories.” Listings of professional personal historians working in different media around the country.
Tips on recording personal histories. Conference for professionals.
Center for Journal Therapy
“The mission of The Center for Journal Therapy is to make the healing art of journal writing accessible to anyone who desires self-directed change. Our vision is to heal body, psyche and soul through writing.” The Center offers workshops, books and tapes designed to help you engage in journal therapy.
Center for Life Stories Preservation
A resource for helping people capture their family and life stories.
Ethical wills are a way to preserve and pass on your values, beliefs, life lessons, hopes for the future, love, and forgiveness. It is one of the most cherished gifts that you can give to your family and community. Provides information, resources, materials and a facilitators’ network.
Offers ideas, tools, resources, and a free newsletter for patients and caregivers on how to create healing environments that nourish the soul and relieve suffering.
Art & writing by women who have faced breast cancer. Art and healing resources
Healing Story Alliance
Explores and promotes the use of storytelling in healing. Has special story-based project for children in crisis.
The Legacy Center
Has a network of Legacy Center Associates that can help you explore, document and share the stories and lessons of your own life.
“A national project to instruct and inspire people to record each others' stories in sound.”
Has a recording booth in New York City and also Mobile Booths for hour-long recording sessions.
Turning Memories Into Memoirs
Memoir writing and teaching resources (workshops, books, editors, coaches, etc.).
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