T.H.E. BRAIN TRUST (http://www.braintrust.org)
The mission of T.H.E. BRAIN TRUST is to create a healing exchange of information and support among People affected by neurological disorders including patient-survivors, families, caregivers, health professionals and researchers. Their goal is to provide and improve online communication resources.
Camp Good Days & Special Times (www.campgooddays.org)
Camp Good Days is a free-of-charge nonprofit dedicated to improving the quality of life for kids with cancer and their families. They provide programs, activities and services year-round, highlighted by a week of summer camp at our recreational facility on Keuka Lake in Branchport, NY. These activities provide a regular, dependable opportunity for fun and laughter away from the sterile environment of hospitals, which these children have been forced to become accustomed to.
Their site provides a comprehensive list of quality links on caregiving on the Internet. Also includes listings of other resources as well as an "Ask Dr. Caregiver" section.
Caring Bridge (www.caringbridge.org)
A free CaringBridge website helps keep loved ones informed during difficult times. In return, family and friends give patients and caregivers support through guestbook messages.
This website is designed to provide the latest information on chemotherapy to patients and their families, caregivers and friends and to serve as a supplementary tool to the healthcare professional. Chemocare is a program of the Scott Hamilton CARES initiative.
Family Caregiver’s Alliance (www.caregiver.org)
The alliance supports and assists caregivers of brain-impaired adults through education, research, services and advocacy. The organization provides a clearinghouse of information and resources related to medical, social, public policy and caregiving issues related to brain impairments. Their website includes an online support group for friends and family members caring for an adult with cognitive disabilities. It is an excellent resource for information on managing problem behaviors.
Gilda’s Club Worldwide (www.gildasclub.org)
Gilda's Club provides places where men, women, and children with cancer and their families and friends join with others to build social and emotional support as a supplement to medical care. Free of charge and non-profit, Gilda's Clubs offer support and networking groups, lectures, workshops and social events in a nonresidential, home-like setting. Funding is solicited from private individuals, corporations, and foundations.
Inspiration Hospice (http://www.inspirationhospice.com/)
Inspiration Hospice provides the highest quality of hospice care to patients, their families and significant other care providers, developing professional healthcare partnerships, raising the care standard in the communities served and serving as the hospice employer of choice.
National Family Caregivers Association (www.nfcacares.org)
This group provides education and information services, support and validation for caregivers, public awareness and advocacy devoted to improving the quality of life of caregivers. Services for family caregivers include a quarterly newsletter, peer support network, educational materials, national resource referrals and a bereavement program.
OncoLink, the website of the University of Pennsylvania Cancer Center, (www.oncolink.upenn.edu)
Their site offers an unmoderated discussion list for parents, siblings or friends of cancer patients; an e-mail discussion group about hospice-related issues; an extensive bibliography of issues related to caregiving; and an in-depth caregiver education course.
The mission of SuperSibs! is to honor, support and recognize the brothers and sisters of children with cancer. By reaching out to the siblings of those over 12,600 children diagnosed with cancer each year in the United States and Canada, the siblings will feel valued, validated, heard, supported and delighted as recipients of SuperSibs! services and as participants in SuperSibs! activities.
We Can (www.wecan.cc)
A parent-initiated pediatric brain tumor network that serves greater Los Angeles, Bakersfield, Sacramento and the San Francisco Bay area. We Can offers the Veteran Parent Program (one-on-one mentoring), parent support and education meetings, Sibling Workshops, a Teen Group and Family Camp. The life situations of We Can members range from families with newly diagnosed patients, children/teenagers still in treatment and acute recovery to parents of adult children treated more than a decade ago. Our network includes families who have experienced end-of-life care, death and bereavement.