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Organizations


The following excerpt is taken from Appendix C of Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 3nd Edition by Nancy Keene, copyright 2002 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Service organizations

Candlelighters Childhood Cancer Foundation
P. O. Box 498
Kensington, MD 20895-0498
(800) 366-2223 (CCCF)
Web: http://www.candlelighters.org

Founded in 1970, Candlelighters has more than 40,000 members worldwide. Some of the free services provided by Candlelighters are a toll-free information hotline, a quarterly newsletter, various handbooks to help families of children with cancer, local support group chapters, and national advocacy.

Candlelighters Childhood Cancer Foundation Canada
National Office
55 Eglinton Avenue East, Suite 401
Toronto, ON Canada M4P 1G8
(800) 363-1062 (Canada only)
(416) 489-6440 (callers from outside Canada)
Web: http://www.candlelighters.ca/

Provides some of the same services as US Candlelighters.

American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329-4251
(800) 227(ACS)-2345
Web: http://www.cancer.org

Has a national network of employees and volunteers who implement research, education, and patient service programs. Although programs differ according to state, some widely available programs are patient-to-patient visitation, transportation to appointments, housing near treatment centers, equipment and supplies, support groups, literature on a large variety of topics, summer camps for children with cancer, and research and educational programs.

Canadian Cancer Society
565 W. 10th Avenue
Vancouver, BC Canada V5Z 4J4
(888) 939-3333 or (604) 872-4400
Web: http://www.bc.cancer.ca/

Provides some of same services as the US Cancer Society.

Childhood Cancer Ombudsman Program
P.O. Box 595
Burgess, VA 22432
Fax: (804) 580-2502
Email: gpmonaco@rivnet.net

This free service helps children with cancer and their families who are having difficulty gaining access to appropriate education, medical care, healthcare cost coverage, and/or meaningful employment. Services include medical library searches, a second opinion program, and help resolving problems with insurance or discrimination.

Leukemia & Lymphoma Society
1311 Mamaroneck Avenue
White Plains, NY 10605
(914) 949-5213 or (800) 955-4572 (4LSA)
Web: http://www.leukemia.org

This organization provides financial assistance to families (up to $500/year for outpatients), funds research, sponsors a national program in education for the public and the medical community, and publishes a large number of booklets on cancer-related topics.

Organizations that provide information

The Academy for Guided Imagery
P.O. Box 2070
Mill Valley, CA 94942
(800) 726-2070
Web: http://www.interactiveimagery.com

This organization trains health professionals to use interactive guided imagery with their patients and clients. Self care books and tapes on guided imagery are available for sale. They can assist with locating a professional in your area to help your child learn visualization.

The American Society of Clinical Hypnosis
130 East Elm Court, Suite 201
Roselle, IL 60172-2000
(630) 980-4740
Web: http://www.asch.net

A membership organization for doctors, psychologists, and dentists who use hypnosis in their practices. For referral to a local member, send request with a self-addressed stamped envelope.

The Disability Rights Education and Defense Fund
2212 Sixth Street
Berkeley, CA 94710
(800) 466-4232

Answers questions about the Americans with Disabilities Act, explains how to file a complaint, and provides dispute resolution.

Job Accommodation Network (JAN)
P.O. Box 6080
Morgantown, WV 26506-6080
(800) 526-7234 or (800) 232-9675 (800-ADA-WORK)
Web: http://www.jan.wvu.edu

An international consulting service that provides free information about how employers can accommodate people with disabilities., Also provides information on the Americans with Disabilities Act (ADA) and on how people with disabilities can start their own small businesses.

Learning Disabilies Associaton of America
4156 Library Rd.
Pittsburgh PA 15234
(412) 341-1515
Web: http://www.ldanatl.org

Organization of parents, professionals, and individuals with learning disabilies. Has local chapters and provides educational materials.

National Cancer Institute (NCI)
Cancer Information Service
NCI Public Inquiries Office
Bethesda, MD 20892
(800) 422-6237 (800-4-CANCER)
CANCERFAX: (301) 402-5874
Web: http://www.nci.nih.gov

Provides a nationwide telephone service for people with cancer, their families and friends, and the professionals who treat them. The NCI answers questions and sends out informational booklets on a variety of cancer-related topics. CANCERFAX provides treatment guidelines, with current data on prognosis, staging, and histologic classifications. To use CANCERFAX, you need a fax machine with a telephone set to touch-tone dialing. A recording will give you instructions.

Foundation for the Children's Oncology Group (formerly National Childhood Cancer Foundation)
440 E. Huntington Drive
P.O. Box 60012
Arcadia, CA 91066-6012
(800) 458-6223
Web: http://www.ConquerKidsCancer.org

Supports pediatric cancer treatment and research at over 235 hospitals in North America. Their free newsletter, Childhood Cancerline, provides information on new treatments and psychosocial support.

National Coalition for Cancer Survivorship
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910
(301) 650-9127 or (877) 622-7937 (877-NCCS-YES)
Web: http://www.cansearch.org

An organization that addresses the needs of long-term cancer survivors and advocates for change in healthcare to maximize survivor's access to optimal treatment and support. Extensive publications list.

National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013-1492
(800) 695-0285 or (202) 884-8200
Web: http://www.nichcy.org

A clearinghouse that provides pamphlets and information on disabilities and the rights of disabled children and their parents.

PDQ (Physician Data Query)
(800) 422-6237 (800-4-CANCER)
Web: http://www.cancer.gov/cancerinformation/pdq

PDQ is the National Cancer Institute's computerized listing of accurate and up-to-date information for patients and health professionals about cancer treatments, research studies, and clinical trials.

Starbright Foundation
11835 West Olympic Boulevard., Suite 500
Los Angeles, CA 90064
(310) 479-1212
Web: http://www.starbright.org

STARBRIGHT is a nonprofit organization that creates and distributes programs for seriously ill children including STARBRIGHT Videos with Attitude, a video series for teens about communicating with healthcare professionals, returning to school, and coping with frequent and prolonged hospitalization.

Organizations that provide emotional support

Cancer Care, Inc.
275 Seventh Avenue
New York, NY 10001
(800) 813-4673 (HOPE) or (212) 712-8080
Web: http://www.cancercare.org

A national, nonprofit organization that provides referrals, one-on-one counseling, specialized support groups, and educational programs.

Cancer Cured Kids
P.O. Box 189
Old Westbury, NY 11568
(516) 484-8160

An organization dedicated to the quality of life of kids who have survived cancer. Supplies information about educational and psychosocial needs.

Center for Attitudinal Healing
33 Buchanan Drive
Sausalito, CA 94965
(415) 331-6161
Web: http://www.healingcenter.org

A nonprofit, nonsectarian group that sponsors local and national workshops for children with catastrophic or life-threatening diseases and their siblings. The center uses music and art in a supportive program to help children ages 6 to 16 share their feelings about their situation. They have also published several excellent books.

Chai Lifeline/Camp Simcha
National Office
151 West 30th Street
New York, NY 10001
(212) 465-1300 or (877) 388-7462
Web: http://www.chailifeline.org

A national, nonprofit Jewish organization that provides support service programs to children and their families in crisis, including medical referrals, support groups, visits to hospitalized and housebound children, financial aid, transportation, a kosher camp for kids with cancer, and more.

Child Life Council
11820 Parklawn Drive, Suite 202
Rockville, MD 20852
(301) 881-7090
Web: http://www.childlife.org

Promotes the well-being of children and families in healthcare settings by supporting the development and practice of the child life profession with training conferences, publications, and information.

Children's Hopes and Dreams Foundation
280 Route 46
Dover, NJ 07801
(973) 361-7348
Web: http://www.childrenswishes.org

This organization operates a free, worldwide pen-pal program for children (ages 5 to 17) with disabilities, chronic illnesses, or life-threatening illnesses.

Coping Magazine
P.O. Box 682268
Franklin, TN 37068
(615) 790-2400
Fax: (615) 794-0179
Web: http://www.copingmag.com

A bimonthly publication for people whose lives have been touched by cancer.

National Children's Cancer Society
1015 Locust Street, Suite 600
St. Louis, MO 63101
(800) 532-6459 (800-5-FAMILY) or (314) 241-1600
Web: http://www.children-cancer.com

Helps children affected by childhood cancer and their families by providing financial assistance, advocacy, education, and emotional support.

Songs of Love Foundation
P.O. Box 750809, Department P
Forest Hills, NY 11375
(800) 960-7664 (SONG)
Web: http://www.songsoflove.org

A nonprofit organization with a volunteer group of more than 200 artists who produce personalized musical portraits for children with chronic or life-threatening diseases.

Bone marrow and stem cell transplantation

BMT Infonet provides a list of additional resources for bone marrow or stem cell transplant families at http://www.bmtnews.org

Children's Organ Transplant Association
2501 Cota Drive
Bloomington, IN 47403
(800) 366-2682
Web: http://www.cota.org

Provides fundraising help.

National Bone Marrow Transplant Link
20411 W. Twelve Mile Road, Suite 108
Southfield, MI 48076
(800) 546-5268 (800-LINK-BMT) or (248) 358-1886
Web: http://www.nbmtlink.org

Provides hot line, peer support, library, clearinghouse, and suggestions for financial assistance.

National Marrow Donor Program (NMDP)
3001 Broadway Street, NE, Suite 500
Minneapolis, MN 55413
Patient Advocacy: (888) 999-6743; Business Line: (800) 526-7809
Web: http://www.marrow.org

The NMDP has the world's largest computerized listing of potential bone marrow donors-4,500,000 in 2002. The NMDP has cooperative search arrangements with many other registries worldwide. They also provide information on transplant centers in the US.

The National Transplant Assistance Fund
3475 West Chester Pike, Suite 230
Newton Square, PA 19073
(800) 642-8399 or (610) 353-9684
Web: http://www.transplantfund.org

Provides fundraising assistance and donor awareness material to transplant and catastrophic injury patients nationwide.

Camps

For a comprehensive list, visit . http://www.acor.org/ped-onc/cfissues/camps.html.

Camp Simcha
151 West 30th Street
New York, NY 10001
(877) CHAI LIFE
Web: http://www.chailifeline.org

Kosher camp from the national non profit Jewish organization-Chai Lifeline.

Children's Oncology Camping Association International
C/o Children's Memorial Hosptial
2300 Children's Plaza
Chicago, IL 60614
(800) 737-2667
Web: http://www.coca-intl.org

Umbrella organization of groups that provide camps for children with cancer.

Financial and insurance help

Drug reimbursement

Pharmaceutical Research and Manufacturers of America Directory of patient assistance programs
1100 15th St NW
Washington DC 20002
Physican hot line: (800) 762-4636
Web: http://www.phrma.org/searchcures/dpdpap/

List companies that provide prescription medicines free of charge to physicians whose patients might not otherwise have access to necessary medicines.

Centers for Medicare & Medicaid Services - Medicare Prescription Drug Assistance Program
7500 Security Boulevard
Baltimore, MD 21244-1850
(410) 786-3000
Web: http://www.medicare.gov/Prescription/Home.asp

Provides information on programs that offer discounts or free medications to individuals in need.

RxHope.com
Web: http://www.rxhope.com/default.asp

Resource for patient assistance programs offered by federal, state, and charitable organizations.

Financial help

Cancer Fund of America
2901 Breezewood Lane
Knoxville, TN 37921
(800) 578-5284 or (865) 938-5281
Web: http://www.cfoa.org

Helps defray cancer-related expenses not covered by insurance.

Consumer Credit Counseling Foundation
(877) 426-6363
Web: http://www.4-creditcounseling.com/

A national, nonprofit consumer credit counseling agency that provides 24-hour toll-free credit counseling over the telephone. Provides help with budgets, payments, and debt collection.

Genus Credit Management
(800) 570-3341
Web: http://www.genus.org

GCM is a nonprofit credit counseling agency that offers free debt management and educational programs to help financially distressed families.

The Sparrow Foundation
4192 NW 61st Street
Redmond, OR 97756
(541) 549-1144, ext. 8307
Web: http://www.sparrow-fdn.org

Promotes youth compassion by establishng and supporting Sparrow Clubs to help local children in medical crises. Provides a grant for the ill child that local children/schoolmates/friends earn by doing community service or fund raising.

Insurance help

Patient Advocacy Coalition, Inc.
777 East Girard Avenue, Suite 250
Englewood, CO 80110
Toll-free: (877) 435-7123 (877-HELP-123)
(303) 744-7667
Fax: (303) 744-7876
Web: http://www.patientadvocacy.net

Helps resolve insurance reimbursement problems.

Patient Advocate Foundation
753 Thimble Shoals Boulevard, Suite B
Newport News, VA 23606
(800) 532-5274 or (757) 873-6668
Web: http://www.patientadvocate.org

Provides publications, help with insurance problems, and referrals to attorneys.

The National Association of Insurance Commissioners (NAIC)
2301 McGee Street, Suite 800
Kansas City, MO 64108-2604
(816) 842-3600
Web: http://www.naic.org/splash.htm

This is an organization of insurance regulators from the 50 States, the District of Columbia, and the four U.S. territories. The NAIC web site links to each state's insurance regulator. http://www.naic.org/1regulator/usamap.htm

Insure Kids Now!
(877) 543-7669 (877-KIDS NOW)
Web: http://www.insurekidsnow.gov/

The US Department of Health and Human Services began the Insure Kids Now! Program to link the nation's uninsured children with free or low-cost health insurance.

Free air services

AirLifeLine
National Office
50 Fullerton Court, Suite 200
Sacramento, CA 95825
(877)-247-5433 (877-AIRLIFE) or (916) 641-7800
Web: http://www.airlifeline.org

A national nonprofit charitable organization of over 1,500 private pilots who fly ambulatory patients who cannot afford the cost of travel to medical facilities for diagnosis and treatment.

Air Care Alliance
(888) 260-9707 or (918) 745-0384
Web: http://www.aircareall.org

A nationwide association of humanitarian flying organizations that provide flights for healthcare, compassion, and community service.

Angel Flight America
Administrative Office
4620 Haygood Road, Suite 1
Virginia Beach, VA 23455
(877) 621-7177
Web: http://www.angel-flight.org/

Provides free transportation to medical treatment (travel distance 1,000 miles or less) for people who cannot afford public transportation, or who cannot tolerate it for health reasons.

American Airlines - Miles for Kids in Need
P.O. Box 619616
Dallas/Ft. Worth Airport, TX 75261-9616
(817) 963-8118
Web: http://www.unitedwaygso.org/intouch/3u0wyzfl.htm

Provides free travel for ill children and their families. A third party such as a charitable organization, hospital, or other tax-exempt organization must submit travel requests.

Continental Airlines - CAREFORCE
(281) 360-5314

Provides free travel for ill children and one accompanying adult. A third party such as a doctor, social worker, or lawyer must submit requests.

Corporate Angel Network, Inc. (CAN)
Westchester County Airport, Building 1
White Plains, NY 10604
(914) 328-1313
Web: http://www.corpangelnetwork.org

A nationwide, nonprofit program designed to give patients with cancer the use of available seats on corporate aircraft to get to and from recognized cancer treatment centers. Patients must be able to walk and travel without life-support systems or medical attention. A child may be accompanied by up to two adults. This service will also fly donors. There is no cost or financial need requirements.

Delta Airlines - SkyWish Program
(703) 836-7112
Web: http://www.uwint.org/services/delta.html

Helps children and adults with life-threatening illnesses and injuries travel to get the help they need.

Hope Air
Proctor & Gamble Building
4711 Young Street
North York, ON Canada M2N 6K8
(416) 222-6335
Web: http://www.hopeair.org

An organization that provides free air transport to Canadians in financial need who must travel from their own communities to recognized facilities for medical care.

Mercy Medical Airlift
4620 Haygood Road, Suite 1
Virginia Beach, VA 23455
(888) 675-1405 or (757) 318-9175
Web: http://www.mercymedical.org

Dedicated to serving people in situations of compelling human need through the provision of charitable air transportation.

Miracle Flights for Kids
2756 N. Green Valley Parkway, #115
Green Valley, NV 89014-2120
(800) 359-1711 or (702) 261-0494
Web: http://www.miracleflights.org

An organization that purchases commercial airline tickets, utilizes private aircraft, and combines resources from individual donors to provides free transportation to medical treatment centers all across America.

Northwest Airlines KidCares
(612) 726-4206
Web: http://www.nwa.com/corpinfo/aircares/about/kidcares.shtml

Provides air travel to children age 18 and younger who are unable to receive treatment in their home area.

PatientTravel.org
24-hour hot line: (800) 296-1217
Web: http://www.patienttravel.org

Specialists refer callers to the most appropriate, cost-effective charitable or commercial services, including volunteer pilot organizations and special airline transport programs.

Wish fulfillment organizations

In addition to the large organizations listed below, there are many smaller and local organizations that grant wishes to seriously ill children.

Children's Wish Foundation International
8615 Roswell Road
Atlanta, GA 30350
(770) 393-WISH
(800) 323-WISH
Web: http://www.childrenswish.org

US or Europe. Fulfills wishes of terminally ill children.

The Children's Wish Foundation of Canada
95 Bayly Street West, Suite 404
Ajax, Ontario
Canada L1S 7K8
(905) 426-5656
Web: http://www.childrenswish.ca/

Their goal is to provide a once-in-a-lifetime experience for children ages 3 to 18 with high-risk, life-threatening diseases. There are chapters throughout Canada. Parents can call for the location of the chapter nearest to them.

The Dream Factory, Inc.
1218 South Third Street
Louisville, KY 40203
(800) 456-7556
Web: http://www.dreamfactoryinc.com

Chapters in 30 states. Grants wishes of children ages 3 to 18 who are critically or chronically ill.

Make-a-Wish Foundation of America
3350 North Central Avenue, Suite 300
Phoenix, AZ 85012
(602) 279-WISH or (800) 722-WISH
Web: http://www.wish.org

US and international chapters and affiliates. Grants wishes to children under the age of 18 with life-threatening illnesses.

The Starlight Children's Foundation
5900 Wilshire Boulevard, Suite 2530
Los Angeles, CA 90036
(323) 634-0080
Web: http://www.starlight.org

Has chapters in the United States, Canada, Australia, and United Kingdom. Fulfills wishes for seriously ill children ages 4 to 18.

Sunshine Foundation
P.O. Box 255
5400 County Road 547 N
Loughman, FL 33858
(800) 457-1976

No geographic boundaries. Grants wishes to chronically or terminally ill children ages 3 to 21.

Bereavement

The Centering Corporation
7230 Maple Street
Omaha, NE 68134
(402) 553-1200
Web: http://www.centering.org

Publishes a free catalog that contains an extensive listing of books, cards, audiotapes, and videotapes on death and grieving.

Children's Hospice International
901 North Pitt Street, Suite 230
Alexandria, VA 22314
(800) 242-4453 (800-24-CHILD) or (703) 684-0330
Fax: (703) 684-0226
Web: http://www.chionline.org

Provides resources and referrals for children and families of children with life- threatening conditions.

The Compassionate Friends National Office
P.O. Box 3696
Oak Brook, IL 60522-3696
(877) 969-0010 or (630) 990-0010
Web: http://www.compassionatefriends.org

A self-help organization that offers understanding and friendship to bereaved families through support meetings at local chapters and telephone support. (They match persons with similar losses.) Publishes a newsletter for parents and one for siblings.


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