Web Resources and Links
Friday, May 16, 2008

These links are to other Web sites which are not under the control of CCCF. In general, any Web site which has an address (or URL) which does not contain "candlelighters.org" is such a website. These links are provided for convenience of reference only and are not intended as an endorsement by CCCF of the organization or individual operating the Web site or a warranty of any type regarding the Web site or the information on the Web site.

Educational

CURE: Cancer Updates, Research & Education

CURE: Cancer Updates‚ Research‚ and Education‚ is a magazine developed for individuals coping with cancer and blood disorders. CURE provides scientific information in an easy–to–understand format. It is published by physicians committed to providing quality care to their patients.

Exploring Our Molecular Selves

The Human Genome Project (HGP) has created a free multimedia kit to serve as an educational tool for high school students and the general public. The kit, entitled The Human Genome Project: Exploring our Molecular Selves, is available online.

The kit was developed to improve life sciences education in the nation's schools by ensuring that science teachers throughout the country have better access to the latest information about the HGP. The kit is designed primarily for high school students in general or introductory biology classes, but it will also be useful for college students, voluntary health organizations, and the general public.

The Adventures of Captain Chemo

Captain Chemo is a free, interactive online game. A comic strip superhero - devised by a teenage cancer patient and brought to life in a computer game and website by The Royal Marsden Hospital - is about to star in a brand new adventure to help other young sufferers fight the disease.

Kidz with Leukemia: A Space Adventure

An interactive, multimedia CD-ROM was developed as part of a Small Business Innovation Research Grant (SBIR) from the National Institutes of Health (NIH) for children with leukemia (especially ages 4-11), their families, and other interested children and adults, such as teachers and classmates.

American Association for Cancer Research

For those of you who wish to update yourself on some of the recent developments in cancer treatment, the American Association for Cancer Research's webcasts from their 93rd Annual meeting that was held earlier this month in San Francisco, are now available. Selected sessions feature video, audio and slides, so whether you were unable to attend the meeting or missed a particular session, you can access these sessions free of charge.

WHO Pain and Palliative Care Communications Program

The mission of the WHO Pain and Palliative Care Communications Program is to improve access to professional education resources in pain control and palliative care, and actively support the WHO Cancer Control Program; we publish Cancer Pain Release, the only WHO periodical on pain control and palliative care and a well recognized resource for professional education.

Support

American Psychosocial Oncology Society

The mission of American Psychosocial Oncology Society is to advance the science and practice of psychosocial care for people with cancer.

SuperSibs!

As SuperSibs! goes nationwide, our goal is to reach out to brothers and sisters of over 10,000 children who are diagnosed with cancer each year. Through our work, these siblings will feel valued, validated, heard, supported and delighted as recipients of SuperSibs! services and as participants in SuperSibs! activities.

Cancer Warriors, Inc.

We aim to encourage and support the children, siblings and caregivers during treatment for childhood cancer, raise funds for childhood cancer research while raising awareness and educating the public about the devastating diagnosis of childhood cancer, and honor the precious, young lives lost.

Make A Child Smile

Commonly known as MACS, Make A Child Smile is a non-profit organization that provides emotional and financial support to critically ill children and their families. Visitors to the site can participate by sending the featured children and their siblings cards, letters, and small gifts through postal mail.

Planet Cancer

Planet Cancer is a community of young adults with cancer. (You know, that age between "pediatric" and "geriatric", where no one knows whether to give you a lollipop or have a serious talk about your fiber intake.) It's a place to share insights, explore our fears, laugh, or even give the finger to cancer with others who just plain get it.

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.

Disease/Treatment

Community Blood Services

Community Blood Services is a blood bank that offers blood donations, cord blood banking, and bone marrow registration and donation. Founded in 1953, Community Blood Services is a not-for-profit organization devoted to serving the community’s transfusion medicine needs.

Developments in the Treatment & Research of Acute Myeloid Leukemia

Developed by the New York Blood Center, The Leukemia & Lymphoma Society, and CancerEducation.com, this program, hosted by Dwayne Howell, PhD of The Leukemia & Lymphoma Society, features Selina M. Luger, MD of the University of Pennsylvania School of Medicine and an interview with Frederick R. Appelbaum, MD of the Fred Hutchinson Cancer Research Center discussing new treatments for AML and exciting developments in AML research. Rachel Odo, CSW of Memorial Sloan-Kettering Cancer Center offers practical advice for daily living while Mark-Alan Lillibridge shares his uplifting story of survival. (Requires RealOne Player)

Osteosarcoma Clinical Care & Research Program

Osteosarcoma [OS-tee-oh-sar-KO-muh] is a cancer, or uncontrolled growth of cells, that starts in the cells of bones. "Osteo" means bone; "sarcoma" means cancer. Not all bone cancers are osteosarcomas, but osteosarcoma is the most common bone cancer in young people. Usually, osteosarcoma is found in the bones of the arms and legs, but it can happen other places, too.  Our vision is to improve survival and quality of life for teens and young adults with osteosarcoma through advances in patient care, education and research.

Pain.com

Premier educational and informational resource on the Internet for healthcare professionals and consumers who have an interest in pain and its management.

cancerhelper.com

Cancer information including treatment options, symptoms and more.

Reference

National Dialog on Cancer

The National Dialog on Cancer (NDC) is a forum that brings together the principal leaders of key national cancer organizations, agencies and institutions, plus central figures from other public, private and non-profit entities, to foster and support efforts to overcome cancer.

Association of Cancer Online Resources

ACOR, now has a great search feature. It scans the MedLine literature for recent additions in a particular disease type. It's easier than searching MedLine because you don't have to go in and set search limits/dates. Most of the pediatric cancers are listed.

Dana-Farber Cancer Institute

The mission of Dana-Farber Cancer Institute is to provide expert, compassionate care to children and adults with cancer while advancing the understanding, diagnosis, treatment, cure, and prevention of cancer and related diseases.

Blood & Marrow Transplant Information Network

A not-for-profit organization that provides publications and support services to bone marrow, peripheral blood stem cell, and cord blood transplant patients and survivors.

Center for International Blood and Marrow Transplant Research (CIBMTR) 

Unites and builds on the strengths of two leaders in the field of blood and marrow transplantation, the International Bone Marrow Transplant Registry and the Autologous Blood and Marrow Transplant Registry (IBMTR/ABMTR) and National Marrow Donor Program (NMDP).

BC Cancer Agency Drug Database

Oncology Drug information, side effects, and drug interactions.

Blood Counts and Record Keeping

Keeping track of their child's blood counts becomes a way of life for parents of children with leukemia. Unfortunately, misunderstandings about the implications of certain changes in blood values can cause unnecessary worry and fear. To explain blood counts, Patient Centered Guides has provided an excerpt taken from Appendix B of Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 2nd Edition by Nancy Keene, copyright 1999 by O'Reilly & Associates, Inc.

National Cancer Institute (cancer.gov)

The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH), one of eight agencies that compose the Public Health Service (PHS) in the Department of Health and Human Services (DHHS). The NCI, established under the National Cancer Act of 1937, is the Federal Government's principal agency for cancer research and training. The National Cancer Act of 1971 broadened the scope and responsibilities of the NCI and created the National Cancer Program. Over the years, legislative amendments have maintained the NCI authorities and responsibilities and added new information dissemination mandates as well as a requirement to assess the incorporation of state-of-the-art cancer treatments into clinical practice.

OncoLink - University of Pennsylvania Cancer Center

OncoLink was founded in 1994 by Penn cancer specialists with a mission to help cancer patients, families, health care professionals and the general public get accurate cancer-related information at no charge.

www.CancerConsultants.com

Cancer Consultants is dedicated to providing the most up-to-date news and information on cancer treatment, side effects, support, resources, and clinical trials to help cancer patients and their families make informed decisions.

The Pharmaceutical Research and Manufacturers of America (PhRMA)

Represents the country’s leading research-based pharmaceutical and biotechnology companies, which are devoted to inventing medicines that allow patients to live longer, healthier, and more productive lives.

New Medicines in Development for Cancer , 2001 - Pharmaceutical researchers are developing 402 new medicines to thwart cancer—many of them cutting-edge weapons that zero in on the root causes of the disease. This research is being conducted by 170 pharmaceutical and biotechnology companies and the National Cancer Institute (NCI). Ninety-three of the 402 medicines are in development by NCI in conjunction with a company or by itself.

FDA Oncology Tools Web site

Contains a variety of information related to cancer and approved cancer drug therapies.

HIPAA Online

This interactive tool, provided by the Federal Government, helps answer your questions about health coverage and your rights and protections under the Health Insurance Portability and Accountability Act (HIPAA).

RX List-The Internet Drug Index

National Marrow Donor Program

The National Marrow Donor Program (NMDP) is the international leader in the facilitation of unrelated marrow and blood stem cell transplantation. A non-profit organization based in Minneapolis, Minn., the NMDP facilitates unrelated marrow and blood stem cell transplants for patients with life-threatening diseases who do not have matching donors in their families.

Pediatric Oncology Resource Center

This is the place for parents, friends, and families of children who have or had childhood cancer. This site was created by and for people who know young people who are recovering from cancer. This is where we gather our resources, Web links, and references and store our information and tidbits of knowledge.

• Survivors follow up clinics

Patient-Centered Guides

Patient-Centered Guides are a mix of medical, practical and emotional information, grounded in Western medicine, told by people who have been there.

PubMed

PubMed provides access to 9 million citations in MEDLINE and other related databases.

CureSearch National Childhood Cancer Foundation

Supports a network of childhood cancer programs at institutions throughout North America, and in Australia and Europe, which conduct ground-breaking laboratory research and give state-of-the-art care to infants, children, teens, and young adults.

Steve Dunn's CancerGuide

CancerGuide is dedicated to helping you find the answers to your questions about cancer, and especially to helping you find the questions you need to ask.

CancerBACUP

CancerBACUP aims to help people live with cancer by providing information and emotional support for patients, their families and health professionals. It is recognised as the foremost provider of cancer information in the United Kingdom.

Your Child's Comfort: A Team Approach to Managing Your Child's Cancer Pain

This booklet is to help you learn to care for your child's pain caused by cancer or by procedures used to diagnose and treat the disease. There are several things you can do to help minimize your child's pain. You will learn measures which can reduce pain. You will learn how to measure your child's pain and become an active member of the pain team.

Survivorship

Comprehensive Long Term Follow Up Clinics

Outlook: Life Beyond Childhood Cancer

The focus of Outlook is to address the needs of survivors of childhood cancer and their families. By providing information we hope to give survivors and their families the tools to help them become their own advocate.

Survivor Alert

Survivor Alert is sponsored by A Lion in the House. Survivor Alert offers information on survivorship issues, such as who is at risk, how to get health insurance, how to get your medical records, choosing a healthy lifestyle, and practical matters. It also provides links to studies on childhood cancer survivorship issues.
Review 8/07

Living Beyond the Sword of Damocles: Surviving Childhood Cancer

Brad J. Zebrack, Ph.D., M.S.W. and Lonnie K. Zeltzer, M.D.

As a result of advances in diagnostic and treatment technologies and the coordination of childhood cancer treatment protocols via clinical trials, 3 of every 4 children and adolescents diagnosed and treated for cancer will attain complete remission and cure. In an era in which good health is not just the absence of disease but also the presence of psychological and social well-being, have these advances in pediatric oncology resulted in what van Eys called a “truly cured child?” Furthermore, what about the family? Do we really understand the full impact of having a child, brother or sister diagnosed and treated for cancer? Answers to these questions have the potential to define comprehensive and quality cancer care for this population in that the delivery of health care services must attend to the immediate and long-term health and well-being of childhood cancer survivors and their families.

The Late Effects of Childhood Cancer

Deborah Sullivan Brennan, Special to Apria Healthcare

Childhood cancer, once a death sentence, is now curable in 72 percent of cases, with survival rates over 90 percent for some cancers, according to a study published by University of Michigan researchers in the journal Medical and Pediatric Oncology in 1999. Many survivors, however, are unprepared for the potential health complications of their cure, or for the lifelong checkups and follow-up care they require.

Beyond the Cure

Beyond the Cure is sponsored by the National Children's Cancer Society (NCCS). Beyond the Cure hosts an informative web site, with useful information on survivorship issues and links to recent journal articles. They also sponsor periodic teleconferences on issues of importance to survivors of childhood cancer.
Review 8/07

Clinical Trials

ClinicalTrials.gov

The U.S. National Institutes of Health, through its National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies. This database contains 4000 studies at 47,000 sites, mostly government and university sponsored studies.

Programs

The Sibling Donor Cord Blood Program

The Sibling Donor Cord Blood Program is a non-profit program, funded by the National Institutes of Health. We facilitate the collection, transportation and storage of umbilical cord blood free of charge for eligible families.

B.A.S.E. Camp Candlelighters Cancer Foundation

Provides a year-round base of support for children and families facing the challenge of living with AIDS, cancer, and other blood related illnesses.

Children's Oncology Camping Association International

C.O.C.A., Children's Oncology Camping Association International is an international assembly of people providing camping programs for children with cancer. Many of our members camps serve a broad range of special need populations but we all share the common thread of working with pediatric oncology patients.

The Heart Connection Children's Cancer Programs

Runs a Oncology Camp and a Sibling Camp for brother or sisters who have a sibling with cancer or have lost a sibling to cancer.

First Descents

A kayak camp for young adults with cancer. The camp is free, one-week residential camp held in Vail, Colorado.

Media

Vital Options International

A not-for-profit organization using communications technology to reach every person touched by cancer. Vital Options mission is to faciliate a global cancer dialogue. Vital Options and The Group Room radio program dissolve the barriers of time and distance. We allow people from all walks of life, all neighborhoods, and in any physical condition to meet, talk, take care of one another, exchange information, and speak in a unified voice about the cancer experience. We strive to maintain a helpful, informative, easy-to-use website.

Foundations

Lance Armstrong Foundation

The mission of the Lance Armstrong Foundation is to enhance the quality of survival of those diagnosed with cancer. The LAF seeks to promote the optimal physical, psychological, and social recovery and care of cancer survivors and their loved ones.  Please visit the LAF at www.laf.org.

Ronald McDonald House Charities

Ronald McDonald Houses provide a "home-away-from-home" for the families of seriously ill children receiving treatment at nearby hospitals.

Songs of Love Foundation

Songs of Love Foundation is a nonprofit organization that creates and delivers fully produced personalized songs, free of charge, to children and teens who are battling serious illnesses. Each child receives a CD or cassette of their very own "Song of Love" containing their names and all the special things and people they love. For more information visit songsoflove.org or call 1-800-960-SONG.

Hope Street Kids

The mission of Hope Street Kids is to eliminate childhood cancer through advocacy, education and cutting-edge research, and to help sustain and support children with cancer and their families during and after treatment.

STARBRIGHT Foundation

The STARBRIGHT Foundation is dedicated to the development of projects that empower seriously ill children to combat the medical and emotional challenges they face on a daily basis. STARBRIGHT projects do more than educate or entertain: they address the core issues that accompany illness – the pain, fear, loneliness, and depression that can be as damaging as the sickness itself.

Dutch Candlelighters Organization

The Brain Tumor Society

The Brain Tumor Society exists to find a cure for brain tumors. It strives to improve the quality of life of brain tumor patients and their families. It disseminates educational information and provides access to psycho-social support. It raises funds to advance carefully selected scientific research projects, improve clinical care and find a cure.

The International Confederation of Childhood Cancer Parent Organizations (ICCCPO)

This web site is intended to be a major resource for parent organisations, and individual parents, throughout the world. It brings together information about parent organisations around the world, and provides links to sites which contain information of value for parents and their families.

Brain Tumor Foundation for Children

The Brain Tumor Foundation for Children, Inc. is a 501(c)(3) non-profit organization, whose mission has remained the same since its inception in 1983:  To provide emotional and informational support to families of children with brain tumors. To provide public education and awareness of the disease. To raise funds to support research for a cure and for the improvement in the treatment and quality of life of the victims of pediatric brain tumor disease.

Children’s Brain Tumor Foundation

The Children’s Brain Tumor Foundation, a non-profit organization, was founded in 1988 by dedicated parents, physicians and friends. Our mission to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.

Savannah's Second Wish, Inc.

Savannah's Second Wish, Inc. is a not-for-profit pediatric cancer organization formed in 2004 in memory of six-year old Savannah Olson who battled cancer on and off for over three years.

JMML Foundation

The JMML Foundation has been established to provide much needed support and information specifically for families affected by Juvenile Myelomonocytic Leukemia and for those charged with treating the disease. 

Child Cancer Foundation in Hungary

The Child Cancer Foundation is the biggest in Hungary, supporting over 600 children. The foundation also helps hospitals and medical centers by buying the latest equipments in medical technology. "We are working very hard to rise the chances of these little children for a better and healthy life."

Legal Support

American Society of Law, Medicine & Ethics

The mission of the American Society of Law, Medicine & Ethics is to provide high-quality scholarship, debate, and critical thought to the community of professionals at the nexus of law, health care, and ethics.

Transportation

AirLifeLine

AirLifeLine is a national non-profit 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. Our pilots donate their time, aircraft and fuel to make this air transportation service totally free of charge for patients who qualify.

www.PatientTravel.org

This web site is a service of the National Patient Travel Center - the facility housing all the programs of Mercy Medical Airlift - a national charity. The Center is in Virginia Beach, Virginia and provides a variety of services to those seeking a way to travel long-distances for specialized medical evaluation, diagnosis and treatment.

Comforts

Angels for Hope

Angels for Hope are available free of charge to those who are severely injured and/or chronically ill, as well as their caregivers, or just someone that needs hope - as a tangible reminder that you are not alone, that others care, and that we remember you in our thoughts and prayers. All angels are sent with a small note to the receiver carrying a special verse and, if you want them to know, who it was requested by.

Songs of Love Foundation

Songs of Love Foundation is a nonprofit organization that creates and delivers fully produced personalized songs, free of charge, to children and teens who are battling serious illnesses. Each child receives a CD or cassette of their very own "Song of Love" containing their names and all the special things and people they love. For more information visit songsoflove.org or call 1-800-960-SONG.

Quits 4 Cancer

Our purpose is to make cancer patients a little warmer and more comfortable.(The body gets very cold when you have chemo treatments!) Volunteers make and donate handmade quilts to area cancer patients. The quilts are given free to people within our area.

National Children's Cancer Society

The National Children’s Cancer Society was established in 1987 to improve the quality of life for children with cancer through financial and in-kind assistance, advocacy, support services, and educational resources. Since its inception, the N.C.C.S. has provided more than $38.2 million in direct financial assistance to more than 19,000 children with cancer in the United States, and has distributed more than $185 million in donated pharmaceuticals and medical supplies to 65,000 children treated at 54 facilities in 35 countries.
Reveiw 8/07

Accessories

Baboo's Patch

This unique device is intended to hold the ports of a central venous catheter. The patch is simply ironed-on the inside of any tee-shirt or shirt. It gives the patient the ability to move more freely, and will greatly minimize the chances for the catheter to become dislodged.

Kaps 4 Kids

Provides children a motor sports related cap to wear while they undergo their chemo treatment and to supply the clinics with t-shirts to give to the kids when they get sick after their treatment.

Angel Locks, Inc.

Angel Locks, Inc. is a non-profit organization that provides quality, synthetic wigs to children up to age 18 suffering from all types of hair loss.

Locks of Love

Locks of Love is a non-profit organization that provides hairpieces to financially disadvantaged children across the U.S. under age 18 suffering from long-term medical hair loss.  They meet a unique need for children throughout the United States by using donated hair to create the highest quality hair prosthetics. Most of the children helped by Locks of Love have lost their hair due to a medical condition called alopecia areata, which has no known cause or cure. The prostheses we provide help to restore their self-esteem and their confidence, enabling them to face the world and their peers.

Wigs for Kids

Wigs for Kids is a not-for-profit organization providing hair replacement solutions for children affected by hair loss due to chemotherapy, alopecia, burns and other medical conditions.

Happy Heads, LLC

Headwraps for women and children suffering from hair loss.

Beautiful Bald Buddies

Beautiful Bald Buddies mission is to be sure that every child that goes through the painful process of hair loss has a buddy with them to hug and share. We will give a Buddy to as many children as possible through various organizations.

Supporters

The Ride of Love

The Ride of Love (ROL) is a fundraiser for the children of Camp Smile-A-Mile. Camp Smile-A-Mile is an organization that gives kids with cancer a place to go for camp. A place for them to forget about cancer and just have fun and be a kid. A place where they can be themselves….get treatment, go without prosthetic limbs and hair, and be around others who are just like them.

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