Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Resources: Support Organizations

Important support organizations (non-profits) for childhood cancer are listed below; the comprehensive organizations are listed first, followed by ones for specific cancers or type of support.

Here is another list of childhood cancer organizations that I keep: Childhood Cancer Interest Groups. Many of these are small or geographic-area specific, but each organization that helps childhood cancer families or awareness for childhood cancer is important.

General

American Childhood Cancer Foundation (formerly Candlelighters)

PO Box 498
Kensington, MD 20895-0498(800) 366-2223
www.acco.org

Founded in 1970, ACCO/Candlelighters has more than 40,000 members worldwide. Some of the free services provided by Candlelighters are a yearly bibliography and resource guide, quarterly newsletter, and various handbooks to help families of children with cancer.

Childhood Cancer Canada

21 St. Clair Ave East, Suite 801
Toronto, ON Canada M4T 1L9
www.childhoodcancer.ca

Provides some of the same services as US ACCO.

Alex's Lemonade Stand (ALSF)

Alex's Lemonade Stand Foundation
333 E. Lancaster Ave., #414
Wynnewood, PA 19096
(866) 333-1213
www.alexslemonade.org

Alex's Lemonade Stand Foundation (ALSF) emerged from the front yard lemonade stand of cancer patient Alexandra "Alex" Scott (1996-2004). ALSF is now a national fundraising movement, raising more than $30 million and funding over 125 research projects. As of 2010, ALSF has expanded to providing free resources to help get families to treatment. Notably:

American Cancer Society

1599 Clifton Road NE
Atlanta, GA 30329-4251
(800) ACS-2345
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 and province, 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, research and educational programs.

Canadian Cancer Society

565 W. 10th Avenue
Vancouver, BC Canada V5Z 4J4
(888) 939-3333 or (604) 872-4400
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@hughes.net

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

National Children's Cancer Society

The National Children's Cancer Society helps children with cancer and their families by providing financial assistance, advocacy, education, and emotional support.

The National Children's Cancer Society
1015 Locust, Suite 600
St. Louis, MO 63101
314.241.1600 (telephone) or 1-800-FAMILY
314.241.6949 (fax)
www.children-cancer.com/

Starlight Starbright

www.starlight.org

Starlight Starbright helps seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities. Not cancer-specific. Good sections for teens (see Starlight Starbright on the teens page.)

Chai Lifeline

www.chailifeline.org

Chai Lifeline believes that seriously ill children (including children with cancer) need and deserve as happy and normal a childhood as possible. Their programs include: Camp Simcha, professional case management, learning programs, family retreats, insurance support service, wish granting, sibling support, and community services such as volunteer training. Families are invited to contact Chai Lifeline at 1 877 CHAI LIFE or email info@chailifeline.org for more information.

CureSearch

CureSearch

CureSearch is the fundraising arm for the Children's Oncology Group (COG). They raise funds for COG clinical trials and help raise awareness for childhood cancer. The web site has information on childhood cancer and its treatment.

Friends of Scott

www.friendsofscott.org

Friends of Scott (San Diego, CA) provides emotional and financial support for young people with cancer and their families with face-to-face groups, a prom and other special events, scholarships, and a gas and grocery fund. See the web site for current details.

Emmanuel Cancer Foundation

Emmanuel Cancer Foundation

The Emmanuel Cancer Foundation (ECF) helps New Jersey families cope with the emotional, material and, in some cases, financial burdens that arise when struggling with a diagnosis of pediatric cancer.

CancerCare

CancerCare is a national non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral and direct financial assistance.

Gilda's Clubs

Different Gilda's Clubs have different programs for children with cancer and their families, but potentially a clubhouse could have groups for children and teens with cancer, groups for siblings, and groups for parents. Also a big part of Gilda's Club is workshops and classes - anything from art workshops to informational type things (like Ask the Doctor, Insurance Q & A, etc) and social events. Visit the Gilda's Club Worldwide website (www.gildasclub.org) and check if there's a Gilda's Club in your area, then call the individual clubhouse to find out what they offer.

Leukemia and Lymphoma

Leukemia & Lymphoma Society

1311 Mamaroneck Avenue
White Plains, NY 10605
(914) 949-5213or 1-800-955-4LSA
www.lls.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.

Brain Tumors

American Brain Tumor Association

The ABTA produces publications about brain tumors, holds patient conferences, offers support by telephone, publishes newsletters three times yearly, and funds research. The web site has information on these services and on brain tumors and their treatment.

Brain Tumor Foundation of Canada

Provides patient and family support, publications, quarterly newsletter, and funds for research. On the web site, especially useful is a downloadable pdf file on pediatric brain tumors.

Childhood Brain Tumor Foundation

Provides information and advocacy for children and families, funds research, and publishes three annual newsletters. The web site has information on tumors, treatment, family support, and a great kid's corner.

Children’s Brain Tumor Foundation

Provides support for families and children, resource guides, and funds for research. The web site offers practical information on school issues, hospital stays, and going home, as well as a medical overview of brain cancers.

James Croft Hope Foundation

The Foundation is based in Australia and assists families of children with brain tumors. The web site, begun in 2001, is a good source of information on pediatric brain tumors, including a bibliography of journal articles and clinical trials as well as good descriptions of brain tumors and their treatment.

Making Headway Foundation, Inc.

Making Headway Foundation provides care and comfort for children with brain and spinal cord tumors while funding medical research geared toward better treatments and a cure.

Making Headway provide a range of free services to families in NY, NJ or CT:

Brain Tumor Foundation for Children

www.braintumorkids.org

This foundation provides support for families of children and young adults with brain and spinal cord tumors. In 2012, they serve Alabama, Florida, Georgia, Kentucky, Louisiana, Mississippi, South Carolina, and Tennessee, but they plan to expand to other states. Check their web site for details.

Children's Tumor Foundation: Neurofibromatosis Foundation

The neurofibromatoses (NF) are a set of genetic disorders which cause tumors to grow along various types of nerves. NNFF funds research to find effective treatments and a cure for neurofibromatosis. It provides direct services to children and adults with NF, as well as information and resources to the public and medical professionals.

Pediatric Brain Tumor Foundation of the United States

The Pediatric Brain Tumor Foundation of the United States (PBTFUS) seeks to find the cause and cure of brain tumors in children by supporting medical research, increasing public awareness of the disease and aiding in early detection and treatment of childhood brain tumors. Promotes awareness of pediatric brain tumors, provides patient support, internet conferences, and publishes educational materials and a quarterly newsletter, The Helping Hand. Scholarships are available for pediatric brain tumor survivors who wish to extend their education past the high school level (see the scholarship page on ped-onc).

The National Brain Tumor Society

Provides telephone support, national and regional patient conferences, publications, free quarterly newsletter, caregiver programs, patient support network, support groups, and funds for research. The web site publishes the newsletter (and archives thereof) online, fact sheets, clinical trials, "ask the health professional", and helps for coping, including message boards and support groups. (Not peds specific; located in the San Francisco Bay Area.)

We Can, Pediatric Brain Tumor Network

This Los Angeles-based network sponsors lectures, social events, support groups, phone and e-mail network, "veteran parent" programs (organized mentoring at participating hospitals), and parent advisory councils (national and local). The web site publishes the newsletters online.

Friends of Jaclyn

The mission of Friends of Jaclyn is to improve the quality of life for children battling pediatric brain tumors. They match up children who are at all stages of their battle with college and high school sports teams who adopt them onto their team. The teams provide friendship, support and love to the child and his or her family and help them through this very difficult time. They are located in Cortlandt Manor, NY.

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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