Creating a Community of Care 

Community

 

          Home Giving Volunteer Contact Us Search & Info
 

Home
Up

Community - Living With an Illness
Last Updated: March 04, 2008

 

bullet

Partnership for Parents
bullet

 A Support Network for Parents of Children with Serious Illnesses

 No matter where you are in this journey, you share something with every other parent of a child with a serious illness - we find ourselves pacing the floor in the middle of the night, worrying and wondering. We want to do everything we can to ease our child’s pain and help them live fully. Lack of sleep, money worries, work pressures, the needs of our other children, our spouses and our relatives—everything has an effect on our ability to cope.

Other parents just like you have done it and are doing it right now. This site is created for you by those parents. We understand what you are going through because we have been there ourselves. We have insights and experience to share and knowledge that you won’t readily find anywhere else.

We want this site to be a haven (albeit an electronic one) where you can feel the solace of kindred spirits while finding the information you need to cope with your situation and navigate this difficult journey.

bullet

Spencer Crawford Children's Foundation
bullet

Spencer Crawford Children's Foundation, Inc.'s services are tailored to meet the needs of each individual family and child. Just as no two people are alike, no two illnesses or family situations are the same. Some families may need limited assistance for a short period of time while other families need additional assistance for a longer period of time. Our services are free to those families caring for a child diagnosed with a life threatening illness. We rely solely on corporate, private and public donations to fund our services.

bullet

Children's Cancer Association

bullet

National Humor Month
bullet

National Humor Month was founded in 1976 by best-selling humorist Larry Wilde, Director of The Carmel Institute of Humor. It is designed to heighten public awareness on how the joy and therapeutic value of laughter can improve health, boost morale, increase communication skills and enrich the quality of one's life.

bullet

LastChapters - Stories about living with dying
bullet

LastChapters is founded on the belief that when we're feeling isolated, desperate, or simply curious about our situation, we benefit profoundly from the lessons learned by others. They can console us. They can offer us ways to heal ourselves. They can teach us how to live with dying. Recently opened March, 2003

bullet

GrowthHouse
bullet

Helping children, families, and professionals with illness, grief, and many other issues in end-of-life care. This page contains links to a wonderful variety of resources, including pieces written by parents and teens. 

bullet

Brave Kids

bullet

Brave Kids is a non-profit organization that serves the needs of children with chronic and life threatening illnesses by harnessing the power of the Internet. By creating a unique Internet community, www.bravekids.org fills a large void for seriously-ill children and their families by providing a comprehensive directory of healthcare specialists, relevant medical information from healthcare professionals, a community chat room, interactive contests and an online store for children with special needs. Brave Kids also provides computers to seriously ill children from low-income families through its corporate donation program.
Thorough & absolutely wonderful.

bullet

Kidneeds

bullet

Kidneeds is a worldwide resource that provides children with special needs, families and other caregivers with access to comprehensive information. Subscribers and guests can find professional opinions on important topics, learn about public health policy and advocacy efforts, link to programs and services, communicate through message boards and chat opportunities, connect with other caring families and friends, and purchase a wide range of products specifically tailored for children with special needs in one simple to shop place. Thorough & absolutely wonderful.

bullet

Band-Aids & Blackboards

bullet

 When Chronic Illness...or Some Other Medical Problem...Goes to School. This is a site about growing up with medical problems...any ole type. Its goal is to help people understand what it's like, from the perspective of the children and teens who are doing just that. These kids have become experts at coping with problems that most of you have never heard of. They'd like you to know how they do it, and they hope that you'll be glad you came to visit. I've divided the contents into three ponds; one for kids, one for teens, and one for adults. Figure out which you are, and jump in.
Another wonderful site.

bullet

Supportive Care of the Dying

bullet

 Every day human beings move in smaller and larger ways towards the day of their death. Health care organizations, physicians, nurses, clergy and social service providers are continually seeking ways to improve end-of-life care. At Supportive Care of the Dying: A Coalition for Compassionate Care, so are we.

bullet

The Missoula Demonstration Project

bullet

 Begun in 1996, this project has combined community-based action with extensive research on living with life-limiting illness, death, dying, caregiving, and grief in Missoula County, Montana. They have achieved excellent results, and serve as a model for others. Available also are effective pain scale and advance directives tools.

bullet

Hopes and tears Hometown
bullet

This is a virtual community where families of children with life-threatening illnesses can come together for support and information, regardless of race, religion, lifestyle, or ability to pay.

bullet

Accordant.com
bullet

This site offers communities providing support for those with chronic disorders such as CIDP, hemophilia, multiple sclerosis, Gaucher's disease, etc. 

bullet

Candlelighters Childhood Cancer Foundation

bullet

Cystic Fibrosis Caregivers' Community
bullet

Web of Care provides information, support and products for people caring for a loved one with cystic fibrosis at home.

bullet

Leukodystrophy Links to many support sites about this class of disorders.

bullet

United Mitochondrial Disease Foundation

bullet

Family Village for Mitochondrial Disorders


Send mail to the webmaster with questions or comments about this web site.
Last modified: June 18, 2008