The Internet is an invaluable source of information. This resource can connect you with helpful resources all over the world. We are constantly researching new sources of information and other web sites relating to our mission. Below you will find links to information on (click on topic):

Advance Directives
ALS - Amyotrophic Lateral Sclerosis ("Lou Gehrig's disease")
Grief & Bereavement Support
Healthcare
Hospice Care

Complementary and Alternative Medicine (CAM)
Everflowing - Training in Touch Techniques

Children's Healthcare
Children's Hospice
Family Support for the Loss of a Child
Volunteer Programs Supporting Families - Hannah's Friends

Hospice Education & Spiritual Care
Professional Hospice Organizations

Caregiver self-care

We believe that you will find these resources useful if you are someone who is or will be embarking upon the caregiving journey for a terminally-ill loved one.


Advance Directives

http://www.uslivingwillregistry.com/ - The U.S. Living Will Registry is a privately held organization that electronically stores advance directives, organ donor information and emergency contact information, and makes them available to health care providers across the country 24 hours a day through an automated system. Preparing an advance directive involves more than simply filling out a form. The time you spend thinking about the kind of care you want, or don't want, and discussing your wishes with your family and loved ones is much more meaningful than simply checking off boxes on a form. The written document is a good way to memorialize and record your thoughts and choices, but it is no substitute for time spent discussing those choices with your loved ones.

http://www.choicesbank.org - The Choices Bank, the first community-based repository to make advance directives available anytime. This is a free community service. There is no charge for depositing your advance directive, viewing it, printing it, or for depositing revised versions of it.

http://www.alsa.org/ - The ALS Association (ALSA) is the only national not-for-profit health organization dedicated solely to the fight against ALS. ALSA covers all the bases - research, patient and community services, public education, and advocacy - in providing help and hope to those facing the disease. The mission of The ALS Association (ALSA) is to find a cure for and improve living with amyotrophic lateral sclerosis..

http://www.extrahands.org/ - Extra Hands for ALS is a national voluntary service charity assisting people with ALS, also called Lou Gehrig's disease. Extra Hands is expanding nationally and now operates in many cities in the United States. Through Extra Hands for ALS, high school and college students volunteer to help people with ALS and their families by doing chores and errands or just providing company for the homebound. Students also organize and participate in ALS public awareness events designed to teach their peers and communities about the disease.

http://nccam.nih.gov/ - the National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government's lead agency for scientific research on complementary and alternative medicine (CAM). They are one of the 27 institutes and centers that make up the National Institutes of Health (NIH) within the U.S. Department of Health and Human Services. NCCAM sponsors and conducts research using scientific methods and advanced technologies to study CAM. CAM is a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine.

http://www.everflowing.org/ - Everflowing, founded by Irene Smith, is an educational outreach program dedicated to teaching specific touch skills as an intergral component to end-of-life care. The Everflowing training program provides educational resources and training to bodyworkers, healthcare professionals and hospice volunteers.

http://www.sterlingheart.com - an excellent source of self-care resources for caregivers dealing with stress and compassion fatigue. In addition to healing and relaxing music, self-care books, gifts, and workshops, the site includes inspiring stories and helpful links to hospice and healthcare organizations.

http://www.childrenshospitals.net - the National Association of Chidlren's Hospitals and Related Institutions (NACHRI) promotes the health and well-being of children and their families through support of children's hospitals and health systems that are committed to excellence in providing health care to children. It does so through education, research, health promotion and advocacy. On this site you may search for children's hospitals by geographic region, programs, services, research, and more.

http://www.childrensoncologygroup.org/ - the Children's Oncology Group is a National Cancer Institute-supported clinical trials cooperative group devoted exclusively to childhood and adolescent cancer research. Their mission is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care.

http://www.hopkinschildrens.org/ - the Johns Hopkins Children's Center offers one of the most comprehensive pediatric medical programs in the country, from performing emergency trauma surgery, to finding causes of and treatments for childhood cancers, to delivering a child’s good bill of health. The Harriet Lane Compassionate Care Program at the Johns Hopkins Children's Center provides palliative care, the comprehensive management of the physical, psychological, social and spiritual needs of children with life-limiting conditions and their families.

http://www.hospicecc.org/ProgramsServices/ComfortforKids - the Comfort for Kids program provides comprehensive, in-home healthcare and support for San Francisco Bay Area children with life-limiting illnesses. With ten years of experience, Comfort for Kids is respected as a leader in providing pediatric palliative and hospice care in Northern California.

http://www.chionline.org/ - the Children's Hospice International (CHI), a non-profit organization, was founded in 1983 to promote hospice support through pediatric care facilities; to encourage the inclusion of children in existing and developing hospice, palliative, and home care programs; and to include the hospice perspectives in all areas of pediatric care, education, and the public arena. CHI provides education, training and technical assistance to those who care for children with life-threatening conditions and their families.

http://www.georgemark.org/ - the George Mark Children's House is the first freestanding children's respite and end of life care facility in the United States. The House, located in San Leandro, California, offers respite support (round-the-clock), transitional care, and end of life care for children with life limiting or terminal illnesses. All care is informed by the principles of palliative care. Additional support services are available to all family members. Services are provided regardless of a family's ability to pay.

http://www.attitudinalhealing.org - the Center for Attitudinal Healing helps people support one another to overcome conflict, fear and feelings of isolation that can accompany a life crisis, and encourages a choice of peace and love. They offer a variety of services such as giving emotional and spiritual support to family members of a life-threatened person, visiting people who are confined to their homes or the hospital because of an illness, and offering loss and grief support.

http://www.thefamilylink.com - the Family Link is is a nonprofit guest house for families who are visiting people with aids or other life threatening illnesses in the San Francisco area.

http://compassionatefriends.org/ - the Compassionate Friends organization assists families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive. Compassionate Friends is a national nonprofit, self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents and siblings. There is no religious affiliation and there are no membership dues or fees.

http://www.grief-recovery.com/index.html - the Grief Recovery Institute is an internationally recognized authority that provides programs for The Compassionate Friends, The National SIDS Foundation, The National AIDS Network, The University of California at Irvine, Chapman University, and many others. This site includes books and articles that are very helpful to those who have just experienced the death of a loved one.

http://www.sachealthdecisions.org - Sacramento Healthcare Decisions is an organization focusing on educating the public on end-of-life issues.

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1 - Partnership for Caring: America's Voices for the Dying is a national nonprofit organization that partners individuals and organizations in a powerful collaboration to improve how people die in our society. Among other services, Partnership for Caring operates the only national crisis and information hotline dealing with end-of-life issues and provides state-specific living wills and medical powers of attorney.

http://www.growthhouse.org/hospice.html - this is an excellent source of information on a variety of topics provided by Growth House.

http://www.lifes-end.org/ - The Missoula Demonstration Project, now known as Life's End Institute (LEI) , is an innovative community project that is working to improve how people experience dying, caregiving, death, and bereavement. This site provides resources for those who wish to work toward the improvement of end-of-life care. LEI has helped over 200 communities nationwide in their own efforts to improve end-of-life care.

http://www.zenhospice.org - inspired by a 2,500 year old Buddhist tradition, Zen Hospice Project (ZHP) is a fusion of spiritual insight and practical social action. Begun in 1987, ZHP is now nationally recognized as an innovative model in the movement to improve end-of life care. ZHP provides a spectrum of collaborative services including residential hospice care, volunteer programs and educational efforts that foster wisdom and compassion in service to the dying.

http://mettainstitute.org/index.html - The Metta Institute is a new organization and outgrowth of the Zen Hospice Project (ZHP), nationally recognized as an innovative model in the movement to improve end-of life care. The Director, Frank Ostaseski helped form ZHP in 1987 and guided the program for 17 years. Currently, Metta's primary program is The End-of-Life Care Practitioner Program, first developed in 2002 as a project of ZHP's Institute on Dying. The goal of this innovative training is to establish a national network of educators, advocates and guides for those facing life-threatening illness and the individuals and systems that serve them.

http://www.nhpco.org/ - the National Hospice & Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.

http://www.hospicefoundation.org/ - the Hospice Foundation of America is a not-for-profit organization that provides leadership in the development and application of hospice and its philosophy of care. Through programs of professional development, research, public education and information, Hospice Foundation of America assists those who cope either personally or professionally with terminal illness, death, and the process of grief.

http://www.hannahsgift.com - this site provides information about the book Hannah's Gift. The book tells the true and heart-filled story of a family who lost Hannah to cancer at 4 years old. This story was the inspiration for the HEAL Project's Hannah's Friends program, which provides emotional and spiritual support to families with terminally ill children at no cost to the families.