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RESOURCES

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."


KidsCope
3400 Peach Tree Road - Suite 703
Atlanta, GA 30326
404-233-0001

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.


Kids Konnected
27071 Cabot Road, Suite 102
Laguna Hills, CA  92653
949-582-5443 
Hotline: 1-800-899-2866 for calls outside California
www.kidskonnected.org

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
1-800-4-CANCER

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.
http://www.acor.org

“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
http://www.assoc-cancer-ctrs.org

“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
http://www.betterhealthfoundation.org

“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)
http://www.canceranswers.org

“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
http://www.breastcancerfund.org

National organization focused on identifying the causes of breast cancer and preventing the disease through education, advocacy, and outreach.


Cancer Care
http://www.cancercare.org

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
http://www.cancerguide.org

Offers advice on how to get and understand more information about cancer and treatment from someone who has been there.


Cancer News
http://www.cancernews.com

Provides updated articles on breast cancer research.


Cancer Survivorship
http://www.canceradvocacy.org

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.”


Commonweal
www.commonweal.org

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.”


Compassion Books
http://www.compassionbooks.com

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
http://www.couragetochoose.com

Consultation, workshops, and educational offerings for professionals and the public related to essential conversations about end-of-life wishes.


Dying Well
http://www.dyingwell.org

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
http://www.gildasclub.org

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.
http://www.growthhouse.org

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.


KidsCope
http://www.kidscope.org

“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
http://www.makingmemories.org

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
http://www.mommyslight.org

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
http://www.mothersanddaughters.org

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)
http://www.nabco.org

Searches “best resources on the net” for breast cancer information.


National Breast Cancer Centre (NBCC), Sydney, Australia
http://www.nbcc.org.au/

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.


OncoChat
http://www.oncochat.org

Online peer support for survivors, families and friends.


OncoLink
http://www.oncolink.upenn.edu

A comprehensive guide to cancer information provided by The University of Pennsylvania Cancer Center.


Sharsheret
http://www.sharsheret.org

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
Http://www.komen.org

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
http://www.lookingglass.org/parents

Has extensive National Resource Center on Parents with Disability.


WebMD Health
http://my.webmd.com

[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.


Wellness Community
http://www.thewellnesscommunity.org

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
http://www.y-me.org

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
www.youngsurvival.org

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:

www.kidscope.org
www.kidskonnected.org
www.kid-support.org
www.siblinks.org
www.riprap.org
www.childrenstreehousefdn.org
www.mommyslight.org
www.lookingglass.org/parents
www.gillettecancerconnect.org/women

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Recording Life Stories and Legacies / Arts & Healing

Art.Rage.Us
http://www.breastcancerfund.org/artrageus.htm

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
http://www.artheals.org

“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
http://www.personalhistorians.org

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
http://www.journaltherapy.com

“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
http://www.storypreservation.com

A resource for helping people capture their family and life stories.


Ethical Wills
http://www.ethicalwill.com

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.


Healing Environments
http://www.healingenvironments.org

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.


Healing Legacies
http://www.healinglegacies.org

Art & writing by women who have faced breast cancer. Art and healing resources


Healing Story Alliance
http://www.healingstory.org

Explores and promotes the use of storytelling in healing. Has special story-based project for children in crisis.


The Legacy Center
www.thelegacycenter.net

Has a network of Legacy Center Associates that can help you explore, document and share the stories and lessons of your own life.


StoryCorps
http://www.storycorps.net

“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
http://www.turningmemories.com

Memoir writing and teaching resources (workshops, books, editors, coaches, etc.).

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