Below are some links and resources that you might find
helpful. If you run across additional links that you think others may
find helpful, please e-mail them to firstname.lastname@example.org
Please note that Gold Ribbons for Childhood Cancer Awareness does not endorse any web site.
General Information Financial Support Emergency & Temporary Cash Insurance & Medical Treatment Aid WISH Organizations Pain Management Specific Cancer Support Kids Cancer Camps
Pediatric Oncology Resource Center
This web site, designed by
families who have had children with cancer, contains compassionate,
practical information on many childhood cancer-related issues, including
diagnosis, treatment, family issues, financial, emotional, and
psychological assistance, information on cancer activism, end-of-life
preparation, and stories from other families who have been touched by
Cancerkids is a well-designed, colorful web site where children can
share their stories. Also, families can post inquiries on the site
regarding their child’s current treatment plan and correspond with other
families whose children have already undergone the same treatment.
A non profit organization with chapters in different cities offering
emotional, practical and financial support to families and their children
Christian Cancer Support
This Christian cancer support site is specially designed for families
who have a child diagnosed with cancer. Families can correspond with
other families who have gone through similar experiences, find comfort
through other family’s stories and obtain useful advice on childhood
cancer care, from cancer health tips and sibling’s care, to decorating a
hospital room and end of life concerns and more.
Children's Cancer Association
The Children’s Cancer Association (CCA) is a nonprofit organization that offers award-winning programs,
along with information, advocacy and support that help enrich the
quality of life for seriously ill children and their families.
Life Beyond Childhood Cancer
website is designed for childhood cancer survivors. It features
information on health insurance, finances, long-term health care, school
and job issues, and more. There is also a Search link for specific
information contained within the site or elsewhere on the Internet.
National Cancer Institute
is the official website of the National Cancer Institute. It features
highly detailed, highly accurate information about most cancers and
treatments. However, it can be a little overwhelming and confusing at
times due to its wide range of information. After first entering the
sight, excellent information can be obtained very quickly by clicking
the "CancerNet" link and then clicking the “search” link on the upper
right hand corner of the page.
University of Pennsylvania Cancer Center
by the University of Pennsylvania Cancer Center, this website contains a
large amount of useful information about the many different cancers,
treatment information, plus, relevant children’s discussion groups and
more. To easily access the pertinent childhood cancer information, click
on "Disease Oriented Menus" after entering the site. On the next page,
click on "Pediatric Cancers".
Time to Go
Preparing for the death of a child – planning funerals and memorials – grief links.
American Cancer Society (ACS)
1599 Clifton Rd, NE
Atlanta, GA 30329
Can provide the telephone number of the local ACS office
serving your area; may offer reimbursement for expenses related to
cancer treatment. May include reimbursement for transportation,
medicine, and medical supplies. Offers programs that help cancer
patients, family members, and friends cope with the emotional challenges
they face. Call the number above for your local office. Note:See
"Support organizations in section IV-C" for complete listing of services
offered by ACS.
Cancer Care, Inc.
275 7th Ave
New York, NY 10001
A national nonprofit agency offering a range of support
services to cancer patients and their families, free of charge.
Supplementary financial assistance for home care, transportation, and
National Children’s Cancer Society (NCCS)
1015 Locust, Suite 600
St. Louis, MO 63101
Helps children with cancer and their families by providing
financial and fundraising assistance related to medical treatment such
as lodging and travel. Provides advocacy support interceding on behalf
of children with bills, home care needs, insurance companies, hospitals,
and other agencies to negotiate reasonable financial solutions for a
child’s care. Support services and education about childhood cancer and
nutrition is available as well.
National Hemophilia Foundation (NHF)
116 West 32nd Street, 11th Floor
New York, NY 10001
Does not provide financial assistance to individuals and
families to pay for medical expenses. However, it has emergency
assistance funds that can pay for medical expenses (e.g., prescribed
medication, wheelchair repair). References to other resources of
financial aid that may be available for your particular situation.
Special Love, Inc. (Camp Fantastic)
117 Youth Development Court
Winchester, VA 22602
Offers college scholarships for kids with cancer and emergency funds for families in need.
Wigs for Kids
21330 Center Ridge Road
Rocky River, OH 44116
Nonprofit organization supplies wigs to children under 18
who can’t afford hairpieces and are experiencing hair loss from
chemotherapy, radiation, burns, alopecia or other medical conditions.
Contact the above address for an application, and ask your child’s
oncologist or social worker to verify need. When the wig is finished, a
local hair salon can be requested to donate time for the final fitting.
EMERGENCY AND TEMPORARY CASH
Aid to Families with Dependent Children (AFDC)
A joint federal and state funded program that offers
monthly checks for the care of dependent children who are in financial
need because their parent(s) cannot provide them with needed financial
support. Recipients are most often single parents. There is a
requirement that most AFDC recipients participate in the JOBS program or
attend educational activities, unless they meet one of the following
| Parent is ill, has disabilities, or is taking care of someone in the home who is ill or has a disability
They are the primary caregiver of children younger than 1-3 years of age (each state has different rules about this).|
To apply for AFDC, call your county’s Department of Human
Resources (DHR)/Social Services (DSS). You can find the telephone number
of your county’s DHR/DSS in the county government section of your local
telephone directory. Your local information operator will have the
Food Stamp Program
One of the major assistance programs operated by the U.S.
Department of Agriculture. Coupons or "food stamps" are issued monthly
to qualified low income individuals and families to help them purchase
food. If you want more information about the program or want to apply
for food stamps, contact your county’s Department of Human Resources
(DHR)/Social Services (DSS). You can find the telephone number of your
county’s DHR/DSS in the county government section of your local
telephone directory. Your local information operator will have the
Local Department of Human Resources and Social Services
Each county’s Department of Human Resources (DHR)/Social
Services (DSS) has an office or an individual to handle requests for
emergency assistance. A DHR or DSS can assist with the following:
· Rent deposits or monthly payments
· Moving expenses
· Payment of utility bills
· Financial help towards prescriptions and medical supplies.
The telephone number of your county’s DHR/DSS in the
county government section of your local telephone directory. Your local
information operator will have the telephone number.
State and Local General Assistance Programs
Designed to provide small amounts of cash assistance to
individuals who are not eligible for AFDC or SSI, or who are awaiting
enrollment in another income subsidy program. General Assistance
Programs are available to those in need who cannot qualify for other
income assistance. Applicants must demonstrate the following:
· That they have applied to the SSI Program and AFDC and have been denied or are waiting for word about their eligibility
· That they meet the low income guidelines for a particular GA program
· That the value of their "assets" or personal possessions (e.g.,
furniture, clothing) does not exceed a particular GA program’s limit
Your county’s Department of Human Resources/Social
Services can tell you if your state or county has a General Assistance
Program. If so, it can tell you where to call or how to apply. You can
find the telephone number of your county’s DHR/DSS in the county
government section of your local telephone directory. Your local
information operator will have their telephone number.
Contact you local Candlelighters for Childhood Cancer
chapter as they might be able to help with Emergency assistance
including food, paying bills, gas vouchers and more.
INSURANCE AND MEDICAL TREATMENT AID
American Association of Health Plans
129 20th Street NW, Suite 600
Washington, DC 20036
Insurance Industry Trade Association that will provide information on insurance and health care issues.
Candlelighter’s Childhood Cancer Foundation
7910 Woodmont Ave., Suite 460
Bethesda, MD 20814-3015
Organization formed by parents of young cancer patients.
Helps families cope with the emotional stress of their experiences
through the provision of information and resources. Offers an ombudsman
program to assist families and survivors with problems in education,
employment, insurance, welfare, or military enlistment.
Children’s Health Insurance Program (CHIP)
Care of Family Voices
PO Box 769
Algodones, NM 87001
Provides modest health care, most of it free, for children.
Health Insurance Association of America
1025 Connecticut Avenue NW, Suite 1200
Washington, DC 20036
Offers assistance to people with a history of cancer in locating health insurance. Publications available.
Insurance Coverage and Disputes National Association of Insurance Commissioners
444 N. Capitol Street, NW Suite 701
Washington, DC 20001
Offers help with situations in which you feel you or your
family are not being treated fairly by your insurance carrier.
Medicaid Social Security Administration
Baltimore, MD 21235
Provides information on Medicaid - a federal program
providing financial assistance for medical expenses. Coordinated by the
Health Care Finance Administration (see above). Eligibility requirements
and benefits vary from state to state.
Medical Information Bureau Incorporated
PO Box 105
Boston, MA 02112
Can send a copy of your medical records so that you can
verify the information in them and correct any inaccuracies. Call MIB to
find out the type of information needed to process your request.
Children's Wish Foundation International
PO Box 28785
Atlanta, GA 30358
Grants any wish for any terminally ill child under the age
of 18, regardless of where the child lives or where he or she is
undergoing treatment. Wish expenses are covered for the family including
airline tickets, rental expenses, meals, spending money, and any salary
potentially lost as a result of parents taking time off from their jobs
to share their child’s wish.
Famous Fone Friends
9101 Sawyer Street
Los Angeles, CA 90035
Provides encouragement and friendship to children who are
hospitalized or homebound due to illness or injury. Actors, athletes,
and musicians call children to help lift their spirits. Call or write
for information on enrolling your child in this program.
Give Kids the World
210 S. Bass Road
Kissimmee, FL 34746
Provides educational, recreational and supportive programs
and services that help to relieve the stress endured by children being
treated for a life-threatening illness and their families.
Make-A-Wish Foundation of America
100 West Clarendon
Phoenix, AZ 85013-3518
Grants wishes to children who have life-threatening
medical conditions creating the probability that the children will not
survive beyond their 18th year. This organization operates
internationally and will make referrals to local chapters. The national
office provides services for geographical areas which are not covered by
Walt Disney World Compassion Program
Walt Disney World Community Relations
PO Box 10000
Lake Beuna Vista, FL 32830-1000
Provides free passes for terminally ill children ages 3 to
18 who have not had a wish granted by Disney world or any other
wish-granting organization. It is preferred that requests be made
through your local or national wishing organization.
Prepared in association with Rocky Mountain Candlelighters for Childhood Cancer.
American Academy of Pain Management
13947 Mono Way #A
Sonora, CA 95370
Provides credentialing to practitioners in the area of
pain management. Offers information about managing pain in a home care
environment, resources, and links to other related information.
American Alliance of Cancer Pain Initiatives
1300 University Ave.
Room 4710/ Medical Sciences Center
Madison, WI 53706
Provides an online "Resource Center" which offers
information about cancer pain management. Offers complementary
educational materials, videos for loan, and resources for purchase. Many
free resources and helpful information can be accessed through their
American Pain Foundation
111 South Calvert Street, Suite 2700
Baltimore, MD 21202
Online resource center for children, their families,
friends, and caregivers. Offers information on pain causes, relief
techniques, insurance benefits, and medications. Offers links to other
pain management resources and support.
American Pain Society
4700 W. Lake Ave.
Glenview, IL 60025
Offers people in pain information, guidance, and resources
for pain management. Provides research, treatment practice, and
advocacy for patients with pain.
Provides information and articles on relieving pain associated with cancer.
Cancer Pain Resources
A comprehensive website that offers thorough information
about pain associated with cancer and guidance in how to manage it.
Developed by doctors, educators, and medical professionals
to provide education and support services to physicians, healthcare
professionals, and patients throughout the nation. Informational links
to pain management techniques and medicine.
World Health Organization, USA
Liaison Office in Washington
1775 K Street, NW, Suite 430
Washington, DC 20006
Provides information on pain management with a section on
Childhood Cancer Pain. To access, enter “cancer pain” in the search
window. The objective of WHO is the attainment by all peoples of the
highest possible level of health. Health, as defined in the WHO
constitution, is a state of complete physical, mental and social well
being and not merely the absence of disease. Many helpful links are
available through the website.
SPECIFIC CANCER SUPPORT
Bone Cancer International, Inc.
PO Box 504
Newbury Park, CA 91319
Offers links to specific types of bone cancer, bulletin board, chat rooms, and an “Ask the Experts” section.
European Intergroup Cooperative Ewing’s Sarcoma Study
Offers information on the latest clinical trials and
research available. Provides current treatment information in hopes of
improving survival rate and increasing the quality of life.
Ewings Sarcoma Trials
Lists recent clinical trials offered by pharmaceutical companies.
American Brain Tumor Association
2720 River Road
Des Plaines, IL 60018
Offers free services including publications about brain
tumors, support group lists, referral information, a pen pal program,
and research support.
A Primer of Brain Tumors (booklet)
Alex’s Journey: The story of a child with a brain tumor (for children ages 9-13)
Coping With a Brain Tumor Part I and II
When Your Child is Ready to Return to School
Brain Tumor Information Line
University of Kentucky
Acts as a referral service. When you leave your name and
number, a physician will return your call and make a referral to a
doctor in your area.
The Brain Tumor Society
124 Watertown Street
Watertown, MA 02134
Provides information and support related to all types of brain tumors, both benign and malignant.
Childhood Brain Tumor Foundation
20312 Watkins Meadow Dr
Germantown, MD 20876
Founded by families, friends, and physicians of children
with brain tumors. Provides funding for scientific research and public
awareness. Works to improve prognosis and quality of life. Links to
information and resources relating to brain tumors.
National Brain Tumor Foundation
414 13th Street
Oakland, CA 94612
Provides support and education for brain tumor patients and their families.
National Brain Tumor Radiosurgery Association
600 North Wolfe St
Baltimore, MD 21287
Offers information and support to those who have had or
may have stereotactic radiosurgery brain tumor treatment. Offers
understanding, supportive care and assistance to those in brain tumor
Pediatric Brain Tumor Foundation
315 Ridgefield Dr
Asheville, SC 28806
Publishes Journal of the Society of Neuro-Oncology and
provides educational information and resources related to brain tumors.
Brain Tumor Study Group - Memorial Sloan-Kettering Cancer Center
1275 York Avenue
New York, NY 10021
Leukemia and Lymphoma Society of America
1311 Mamaroneck Avenue
White Plains, NY 10605
Offers family support group programs, referrals to local
sources of help, education, patient aid, and research funding.
Focuses on leukemia, lymphomas, myeloma, and Hodgkin’s disease.
Offers financial assistance for drugs used in care, treatment, and/or
control of disease: transfusing blood; transportation to and from a
doctor’s office, hospital, or treatment center; and x-ray treatment.
Emotional Aspects of Childhood Leukemia: A Handbook for Parents (#14)
What Everyone Should Know about Leukemia (#9)
National Children’s Leukemia Foundation
233 Broadway, Suite 818
New York, NY 10279
A national, nonprofit organization whose sole purpose is
to provide a wide variety of services, support, and referrals to
leukemia patients and their families. Primary goal is to ensure access
to state-of-the-art treatment for every leukemia patient regardless of
ability to pay.
· This organization has a program, “Make a Dream Come True,” which
grants wishes to young leukemia patients. See “Wishing Organizations” in
Lymphoma Research Foundation
8800 Venice Boulevard
Los Angeles, CA 90034
Provides educational information for patients. Website
contains information on what’s new, general information on lymphoma,
support group listings, clinical trial information, and connections to
others with lymphoma through a program called “Cell Mates.”
Lymphoma Resource Guide
The Neuroblastoma Children’s Cancer Society
PO Box 957672
Hoffman Estates, IL 60195
Dedicated to fund-raising, support, research, and advocacy
for children with neuroblastoma and their families. Members are mainly
parents or relatives of children diagnosed with neuroblastoma.
Parent-to-parent information network online and a newsletter are
Intergroup Rhabdomyosarcoma Study Group
Virginia Commonwealth University
Medical College of Virgina MCV Box 646
Richmond, VA 23298
Designs and conducts carefully controlled clinical trials
in the treatment of rhabdomyosarcoma. Funded by the NCI, IRSG is
composed of academic institutions and cancer treatment centers located
throughout the US and Canada. Direct links to clinical trials provided
through this website.
KIDS CANCER CAMPS
Boggy Creek Camp
A camp in central Florida that serves children with different types of medical needs.
B.A.S.E. CAMP Children's Cancer Foundation
Provide a year-round base of support for children and families who are facing cancer.
Children's Oncology Camping Association International
A listing of approximately 65 camps in the US and others elsewhere in the world that have camps for cancer kids.
Camp Fantastic- Special Love Program
A program out of Maryland which includes local contact
number. Summer camping program, as well as other weekend programs
throughout the year. Review 12/8/01
Camp Good Days and Special Times, Inc.
An organization that provides a camping experience and
more for children and adults facing the toughest challenges of life.
Children touched by cancer, and other life challenges, gather Camp Good
Days’ Recreational Facility located on the shores of Keuka Lake in the
heart of the Finger Lakes Region, New York.
A camp for children who have a parent being treated for
cancer. Located at Stanford University, California (among other sites).
it looks like a perfect fit for these kids.
Camp Make A Dream
A camp in Montana with programs for cancer kids, sibs, teens and young adult camp experiences.
Camp Quality USA
Camp Quality is a summer camping experience and year-round support program for children with cancer.
Chai lifeline sponsors Camp Simcha in New York, a kosher
camp for Jewish children with cancer from all over the world.
A camp in Maine that offers week long camping for the
entire family who has a child with cancer. There are workshops,
recreational activities and medical support available.
Candlelighters Weekend Family Retreat
Located in the mountains near Tucson, Arizona, this three-day camp in June offers a retreat for the entire family. Free.
Hole in the Wall Gang Camp
A camp in NE Connecticut that offers camping experiences
to children with cancer and blood diseases. There is a lot of info on
this site about the camp.