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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 info@goldribbons.com
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
GENERAL INFORMATION
Pediatric Oncology Resource Center
www.acor.org/ped-onc/ 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 cancer.
Cancer Kids
www.cancerkids.org 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.
Candlelighters
www.candlelighters.org A non profit organization with chapters in different cities offering emotional, practical and financial support to familes and their children with cancer.
Christian Cancer Support
www.squirreltales.com 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
http://www.childrenscancerassociation.org/ 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
www.outlook-life.org This 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
www.nci.nih.gov This 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
www.oncolink.upenn.edu Designed 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
www.acor.org/ped-onc/timetogo/timetogo.html Preparing for the death of a child – planning funerals and memorials – grief links.
FINANCIAL SUPPORT
American Cancer Society (ACS)
1599 Clifton Rd, NE
Atlanta, GA 30329
Phone: 800-227-2345
Fax: 404-325-2217
Web: www.cancer.org
Services Offered:
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
Phone: 800-813-4673
Fax: 212-719-0263
Web: www.cancercare.org
Services Offered:
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 pain medication.
National Children’s Cancer Society (NCCS)
1015 Locust, Suite 600
St. Louis, MO 63101
Phone: 800-532-6459
Fax: 314-241-6949
Web: www.children-cancer.com
Services Offered:
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
Phone: 800-424-2634
Fax: 212-328-3777
Web: www.hemophilia.org
Services Offered:
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
Phone: 540-667-3774
Fax: 540-667-8144
Web: www.speciallove.org
Services Offered:
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
Phone: 440-333-4433
Web: wigsforkids.org
Services Offered:
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)
Services Offered:
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 requirements:
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 telephone number.
Food Stamp Program
Services Offered:
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 telephone number.
Local Department of Human Resources and Social Services
Services Offered:
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
Services Offered:
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.
Candlelighters
www.candlelighters.org
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
Membership Department
129 20th Street NW, Suite 600
Washington, DC 20036
Phone: 202-778-3200
Web: www.aahp.og
Services Offered:
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
Phone: 800-366-2223
Email: info@candlelighters.org
Web: www.candlelighters.org
Services Offered:
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
Phone: 505-867-2368
Services Offered:
Provides modest health care, most of it free, for children.
Health Insurance Association of America
1025 Connecticut Avenue NW, Suite 1200
Washington, DC 20036
Phone: 202-223-7780
Services Offered:
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
Phone: 202-624-7790
Services Offered:
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
Phone: 800-722-1213
Services Offered:
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
Esses Station
PO Box 105
Boston, MA 02112
Phone: 617-426-3660
Web: www.mib.com
Services Offered:
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.
WISH ORGANIZATIONS
Children's Wish Foundation International
PO Box 28785
Atlanta, GA 30358
Phone: 800-323-9474
Fax: 770-393-0683
Email: childrenswish@mindspring.com
Services Offered:
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
Phone: 310-204-LOVE
Email: fonefriends@aol.com
Services Offered:
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
Phone: 800-995-5437
Web: www.GKTW.org
Services Offered:
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
Ste# 2200
Phoenix, AZ 85013-3518
Phone: 800-722-9474
Fax: 602-279-0855
Email: mawfa@wish.org
Web: www.wish.org
Services Offered:
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 local chapters.
Walt Disney World Compassion Program
Walt Disney World Community Relations
PO Box 10000
Lake Beuna Vista, FL 32830-1000
Phone: 407-828-3453
Fax: 407-828-8121
Services Offered:
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.
PAIN MANAGEMENT
American Academy of Pain Management
13947 Mono Way #A
Sonora, CA 95370
Phone: 209-533-9744
Email: aapm@aapainmanage.org
Web: aapainmanaage.org
Services Offered:
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
Phone: 608-265-4013
Email: aacpi@aacpi.org
Web: http://aspi.wisc.edu
Services Offered:
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 website.
American Pain Foundation
111 South Calvert Street, Suite 2700
Baltimore, MD 21202
Email: painfoundation@aol.com
Web: painfoundation.org
Services Offered:
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
Phone: 847-375-4715
Email: info@ampainsoc.org
Web: ampainsoc.org
Services Offered:
Offers people in pain information, guidance, and resources for pain management. Provides research, treatment practice, and advocacy for patients with pain.
CancerNet
Web: cancer.gov
Services Offered:
Provides information and articles on relieving pain associated with cancer.
Cancer Pain Resources
Web: painandhealth.org
Services Offered:
A comprehensive website that offers thorough information about pain associated with cancer and guidance in how to manage it.
Pain Net
Phone: 614-481-5960
Email: info@painnet.com
Web: painnet.com
Services Offered:
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
Phone: 202-331-9081
Email: info@who.ch
Web: who.org
Services Offered:
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:
Bone Cancer International, Inc.
PO Box 504
Newbury Park, CA 91319
Phone: 805-480-3551
Email: contact@bonecancer.to
Web: www.bonecancer.to
Services Offered:
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
Web: staff.ncl.ac.uk
Services Offered:
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
Web: cureourchildren.org
Services Offered:
Lists recent clinical trials offered by pharmaceutical companies.
Brain Tumor:
American Brain Tumor Association
2720 River Road
Suite 146
Des Plaines, IL 60018
Phone: 800-886-2282
Email: info@abta.org
Web: hope.abta.org
Services Offered:
Offers free services including publications about brain tumors, support group lists, referral information, a pen pal program, and research support.
Publications:
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
Phone: 800-759-2724
Services Offered:
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
Suite 3H
Watertown, MA 02134
Phone: 800-770-8287
Email: info@tbts.org
Web: tbts.org
Services Offered:
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
Phone: 301-515-2900
Email: cbtf@childhoodbraintumor.org
Web: childhoodbraintumor.org
Services Offered:
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
Suite 700
Oakland, CA 94612
Phone: 510-839-9777
Email: nbtf@braintumor.org
Web: braintumor.org
Services Offered:
Provides support and education for brain tumor patients and their families.
National Brain Tumor Radiosurgery Association
600 North Wolfe St
Baltimore, MD 21287
Phone: 410-614-2887
Email: jw@jhu.edu
Web: www.med.jhu.edu
Services Offered:
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 treatment.
Pediatric Brain Tumor Foundation
315 Ridgefield Dr
Asheville, SC 28806
Phone: 800-253-6530
Email: nurse@pbtfus.org
Web: pbtfus.org
Services Offered:
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
Phone: 212-639-2000
Web: mskcc.org
Luekemia/Lymphoma:
Leukemia and Lymphoma Society of America
1311 Mamaroneck Avenue
White Plains, NY 10605
Phone: 800-955-4572
Web: leukemia-lymphoma.org
Services Offered:
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.
Publications:
Emotional Aspects of Childhood Leukemia: A Handbook for Parents (#14)
Leukemia (#3)
What Everyone Should Know about Leukemia (#9)
ALL
AML
Lymphomas
National Children’s Leukemia Foundation
233 Broadway, Suite 818
New York, NY 10279
Phone: 800-448-3467
Email: leukemia@erols.com
Web: leukemiafoundation.org
Services Offered:
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 section II.
Lymphoma Research Foundation
8800 Venice Boulevard
Suite 207
Los Angeles, CA 90034
Phone: 310-204-7040
Email: lrf@lymphoma.org
Web: lymphoma.org
Services Offered:
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.”
Publications:
Lymphoma Resource Guide
Neuoblastoma:
The Neuroblastoma Children’s Cancer Society
PO Box 957672
Hoffman Estates, IL 60195
Phone: 800-532-5162
Web: neuroblastomacancer.org
Services Offered:
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 available.
Rhdyomyosarcoma:
Intergroup Rhabdomyosarcoma Study Group
Virginia Commonwealth University
Medical College of Virgina MCV Box 646
Richmond, VA 23298
Phone: 804-828-9605
Web: views.vcu.edu
Services Offered:
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
http://www.boggycreek.org/
A camp in central Florida that serves children with different types of medical needs.
Review 12/8/01
B.A.S.E. CAMP Children's Cancer Foundation
http://basecamp.org
Provide a year-round base of support for children and families who are facing cancer.
Children's Oncology Camping Association International
http://www.coca-intl.org/
A listing of approximately 65 camps in the US and others elsewhere in the world that have camps for cancer kids.
Review 11/11/01
Camp Fantastic- Special Love Program
http://www.speciallove.org/progrmfr.html
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.
http://www.campgooddays.org/
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.
Camp Kesm
http://campkesemnational.org
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
http://www.campdream.org
A camp in Montana with programs for cancer kids, sibs, teens and young adult camp experiences.
Review 4/3/2
Camp Quality USA
http://www.campqualityusa.org
Camp Quality is a summer camping experience and year-round support program for children with cancer.
Review 11/24/02
Camp Simcha
http://www.chailifeline.org/index.php
Chai lifeline sponsors Camp Simcha in New York, a kosher camp for Jewish children with cancer from all over the world.
Review 6/06
Camp Sunshine
http://www.campsunshine.org/
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.
Review 12/8/01
Candlelighters Weekend Family Retreat
http://www.candlelightersaz.org/pages/?id=7
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
http://www.holeinthewallgang.org/
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.
Reviewed 12/8/01
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