Resources — Cancer Fears Me — image of Bruno

"Cancer Fears Me"
Bruno wearing the "Cancer Fears Me" cap he received when he attended Camp Sunshine, which offers week-long stays for families with a child who has a life-threatening illness.

 

 

Resources

Resources
Resources

Support, Advocacy & Resources
Health Insurance and Legal Information
Transportation
Transplant/Donor Programs
Clinical Trials
 
For Children & Young Adults
Scholarships 
Survivorship
Camps
Wish Foundations
Other Special Services


Support, Advocacy & Resources

 

American Cancer Society
www.cancer.org

American Cancer Society is an international organization dedicated to eliminating cancer by funding research, promoting education and diminishing suffering.

American Childhood Cancer Organization
www.acco.org

American Childhood Cancer Organization (previously Candlelighters) is a national organization that provides programs and services for families of children and adolescents with cancer. It addresses the needs of families through programs that emphasize information, advocacy, and research. It also supports families through affiliate local organizations.

Believe In Tomorrow
www.believeintomorrow.org/index.html
Believe In Tomorrow provides hospital and respite housing services to critically-ill children and their families with clean, comfortable facilities that serve as a tool for families to rejuvenate and reconnect.

CancerCare
www.cancercare.org

CancerCare is a national organization that provides free, professional support services to anyone affected by cancer: cancer patients, caregivers, children, loved ones, and the bereaved. Its programs include counseling and support groups, education, financial assistance and practical help are provided by professional oncology social workers.

Chai Lifeline
www.chailifeline.org

Chai Lifeline provides support services, school and community education, counseling and bereavement support to Jewish children with cancer and other genetic diseases and their families.

CureSearch
www.curesearch.org

CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation through their mission to cure childhood cancer. For parents and families, the website provides specific information and resources for when cancer patients are newly diagnosed, in-treatment, end of treatment and survivorship.

Children’s Brain Tumor Foundation
www.cbtf.org

The mission of the Children’s Brain Tumor Foundation is 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. To support this goal, CBFT programs include a toll-free support hotline, and sharing family experiences through their Family 2 Family Network, as well as through special events.

Fertile Hope
www.fertilehope.org

Fertile Hope, part of the LIVESTRONG Survivorcare Program, is dedicated to providing reproductive information and support to cancer patients and survivors whose medical treatments present an infertility risk.

Health Resources: Cancer
www.healthinsurancesort.com/guide-cancer.htm
A selection of links to information on research, statistics, medical definitions, up-to-date news, etc.

John Theissen Children's Foundation
www.jtcf.org

The organization provides therapeutic and recreational equipment to hospitals and childcare facilities; supports families with financial assistance to defray medical expenses; offers toys to sick and needy children during the holiday season; and fulfills patients' wish lists throughout the year.

Leukemia & Lymphoma Society
www.leukemia-lymphoma.org

The Leukemia & Lymphoma Society is dedicated to funding blood cancer research, education and patient services. Its mission is to cure leukemia, lymphoma, Hodgkins disease and myeloma, and to improve the quality of life of patients and their families. Its Information Resource Center provides accurate, current disease information and support.

The Lexiebean Foundation
www.lexiebeanfoundation.org
Our mission is to help ease the financial and emotional burdens that childhood cancer places upon a family, while providing comfort to children as they cope with the extended hospital stays often associated with their illness. The Lexiebean Foundation supplies care packages to patients, parents and their siblings, and provide financial aid to families on a case-by-case basis.

Love Holds Life
www.loveholdslife.org
Love Holds Life's mission is to help children battling cancer and their families living in the New York Hudson Valley with their medical expenses.

Making Headway Foundation
www.makingheadway.org

The Making Headway Foundation is dedicated to the comfort and care of children with brain and spinal cord tumors. Making Headway Foundation is affiliated with the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders at NYU Medical Center in New York City.

Mesothelioma Cancer Alliance
www.mesothelioma.com
A resource for individuals with this rare form of cancer -- most frequently caused by exposure to asbestos -- and their families.

The Mesothelioma Center
www.asbestos.com

Rare in children, this cancer can be latent for many years.

A Mother's Kiss
www.amotherskiss.org
A Mother's Kiss was formed for the purpose of providing emotional and financial support to the families of childhood cancer patients in the Long Island and Metro-New York area.

National Children’s Cancer Society
www.children-cancer.org

The mission of the National Children's Cancer Society is to provide financial, emotional, educational and medical resources for those in need at every stage of their illness and recovery. They provide financial assistance for medical expenses and household bills, and their affiliated group Beyond the Cure helps survivors address issues such as medical and educational late effects, healthy living and advocacy.

The Robert DiLibero Foundation
www.rdfny.org
The foundation offers under-financed patients and their loved ones a chance to get away with a special night out on the town; assistance paying for wigs or hair pieces; and assistance in organizing bone marrow drives and/or covering HLA testing expenses.

Sick Children Need Involved People
www.skipofny.org

SKIP, a New York City organization, assists medically fragile and developmentally disabled children to live at home with their families rather than in an institution. SKIP provides advocacy services and case management.

The Tom Coughlin Jay Fund Foundation
tcjayfund.org

The Tom Coughlin Jay Fund Foundation partners with Friends of Karen to assist children with leukemia and other cancers and their families by providing emotional and financial support to help reduce the stress associated with treatment and improve their quality of life. The TCJ Fund provides support for families living in counties in North Florida and South Georgia and partners with Friends of Karen in the five boroughs of New York City and in parts of New Jersey.


Health Insurance and Legal Information

 

Patient Advocate Foundation | www.patientadvocate.org
Co-Pay Relief Program | www.copays.org
The Patient Advocate Foundation Co-Pay Relief Program currently provides direct financial support to insured patients, including Medicare Part D beneficiaries, who financially and medically qualify to access pharmaceutical co-payment assistance. The program offers free financial advice and free legal consultation about health insurance.

First Hand Foundation
www.cerner.com/firsthand

First Hand Foundation, founded by the Cerner Corporation, helps individual children and their families who do not have access to health insurance or state aid through both monetary and in-kind donations. The Foundation helps with clinical necessities (such as medication and surgeries), medical equipment and travel related to a child’s care.


Transportation

 

Air Charity Network (formerly Angel Flight America)
www.aircharitynetwork.org

Air Charity Network is made up of independent charity organizations that arrange free air ambulance flights for those patients and families in need.

American Airlines – Miles for Kids in Need
www.aa.com/kids

The Miles for Kids in Need program provides transportation for children and their families, as well as for organizations dedicated to improving the quality of life for children with needs for medical, educational, social services issues and/or for those that heighten public awareness of children's issues. Flights are based on donated air travel miles.

Corporate Angel Network
www.corpangelnetwork.org

Corporate Angel Network matches cancer patients in need of travel by arranging free flights using empty seats on corporate planes. Eligibility is open to all cancer patients, bone marrow donors, and bone marrow recipients who are ambulatory and not in need of medical support while traveling.

Mercy Medical Airlift
www.mercymedical.org

Mercy Medical Airlift's mission is to ensure that no patient in need is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation.

Patient Airlift Services
http://www.palservices.org

Patient AirLift Services arranges free air transportation based on need to individuals requiring medical care and for other humanitarian purposes.
 

 


Transplant/Donor Programs

Blood & Marrow Transplant Information Network
www.bmtinfonet.org

This site provides resource information for transplant centers by disease or type of marrow transplant needed.

DKMS
www.dkmsamericas.org

The DKMS mission is to save lives by recruiting bone marrow donors for leukemia patients. It is the largest bone marrow donor center in the world with over 2 million registered donors.

HelpHOPELive (formerly National Transplant Assistance Fund)
www.helphopelive.org
Helps individuals and families to overcome financial barriers related to transplantation or catastrophic injury through grass-roots fundraising.

National Cancer Institute
www.cancer.gov

The NCI website includes current and comprehensive cancer information from the US government's principal agency for cancer research.

National Cord Blood Program
www.nationalcordbloodprogram.org

The New York Blood Center's National Cord Blood Program was started in 1992 with a grant from the National Institutes of Health to investigate cord blood as a possible solution to a critical public health need: finding appropriate hematopoietic transplants for patients who have no matched bone marrow donors.

National Foundation for Transplants
www.transplants.org

NFT provides financial assistance to transplant patients in all 50 states, plus U.S. territories.

The Bone Marrow Foundation
www.bonemarrow.org

The Bone Marrow Foundation mission is to improve the quality of life for children and adults who are undergoing transplantation as a life saving treatment for leukemia, Hodgkin's and non-Hodgkin's lymphomas, multiple myeloma, aplastic anemia, severe combined immunodeficiency, neuroblastoma and many other cancers and genetic disorders. The services are free to patients and their families and there is no limit on type of disease, transplant or age range.

 


Clinical Trials

 

Musella Foundation for Brain Tumor Research
www.virtualtrials.com

This site includes clinical trial information for patients with brain tumors.

Clinical Trials
www.clinicaltrials.gov/

This U.S. government website has direct links to clinical trial information.

 


For Children & Young Adults

 

CaringBridge
www.caringbridge.org

CaringBridge provides free, personal websites available 24/7 that connect family and friends during a serious illness. The websites are easy to create and add to with health updates, photos and visitors can leave messages of support in the guestbook. It helps ease the burden of keeping family and friends informed.

Cool Kids Campaign
www.coolkidscampaign.org
Cool Kids sends a care package to a patient's home in an effort to make her/his life a bit easier and happier by by providing something fun to do during a chaotic time. Packages are assembled specifically for a child’s age and interests.

DeLand Books
www.delandbooks.com

Dr. Maitland DeLand writes educational and entertaining children’s books to help ease children’s worries about medical and health conditions. "The Great Katie Kate" series focuses on children’s health concerns, such as explaining epilepsy and answering children’s questions about cancer.

Group Loop: Teens. Talk. Cancer. Online.
www.grouploop.org

This site is geared to supporting teens with cancer. Through an on-line database, teenagers with cancer can connect with other teens based on such criteria as age, location and diagnosis.

I’m Too Young For This / Stupid Cancer
www.i2y.org

The mission of I’m Too Young For This is to improve both survival rates and quality of life for young adults living with, through and beyond cancer. Its goals include empowering young adults affected by cancer by reducing late detection, ending their isolation by providing a community of young adults with cancer, improving quality of life and providing meaningful survivorship.

The Morgan Center for Preschool Age Children With Cancer
www.themorgancenter.org/index.php

The Morgan Center is dedicated to providing preschool age children who are undergoing treatment for cancer the opportunity to interact and socialize, in a safe environment that stimulates cognitive and social development.

Songs of Love
www.songsoflove.org

The Songs of Love Foundation website creates free, personalized, original songs to uplift children and teens facing tough medical, physical or emotional challenges. Each CD is professionally produced with lyrics containing the child's name and references individual favorite activities, pets, people, etc.

Starbright World
www.starlight.org/starbrightworld

Starbright World is an online social network through the Starlight Foundation, for teens with chronic and life-threatening medical conditions, and their siblings. Teens can post pictures, chat, create blogs and bulletins and find new friends in similar situations.

Supersibs
www.supersibs.org

Supersibs provides education, awareness and understanding for siblings of children with cancer. The needs of siblings are so often overlooked and the Supersibs programs are specifically designed for siblings to help them cope, understand and learn about their brothers and sisters diagnosed with cancer.

Teens Living with Cancer
www.teenslivingwithcancer.org

This organization offers information and resources about cancer, treatments, and a support network presented by teens for teens.

University of Cincinnati
www.healthadministration.uc.edu/news-and-resources/articles/health-library-cancer
Each situation is different, but some of the advice offered about explaining cancer to children applies to every family. This page also provides more links about talking to children (and other family members) about cancer.


Scholarships

 

Andre Sobel River of Life Foundation
www.andreriveroflife.org

Andre Sobel Award: Young Cancer Survivors’ Essay The Andre Sobel River of Life Foundation offers an annual Essay Award to young survivors of catastrophic illness as a chance to express their personal experiences. A $5,000 cash award is presented to the first place winner with additional prizes going to the second and third place winners. Participants must be between the ages of 12 and 21.

Believe in Tomorrow Children’s Foundation
www.believeintomorrow.org/housing

The Believe In Tomorrow National Children's Foundation provides respite housing far from the routine of hospital visits for critically ill children and their families. This respite housing is free of charge and allows families the opportunity to leave behind the stressful routine of medical treatments and spend quality time together enjoying a range of activities.

Cancer Survivors Fund
www.cancersurvivorsfund.org

This fund provides scholarships to young adults to enable them to start and/or continue their college education. The Fund awards four levels of scholarships to augment the expenses associated with the college educations of young cancer survivors. A selection committee chooses scholarship recipients based on the applicants’ personal hardships, assessing their financial and emotional needs as well as their academic qualifications.

Online Schools' List of Scholarships
www.onlineschools.org/financial-aid/disabilities

Provided as a service and not restricted to online college and university applicants, this lists dozens of scholarships for students with a disability.

Patient Advocate Foundation
www.patientadvocate.org

The Patient Advocate Foundation scholarships provide support to individuals, under the age 25, that are or have been diagnosed with cancer or a critical or life threatening disease. The award amount of $3,000 can be used to defray tuition and other costs. Scholarship requirements and application can be found on the website.

Pediatric Brain Tumor Foundation Scholarship Program
www.pbtfus.org

The PBTF offers scholarships to students who have survived a central nervous system tumor. Awards are used to cover tuition, fees, and books at any accredited post-secondary institution. The PBTF website contains information on how to apply.

SuperSibs! Scholarship Programs
www.supersibs.org

Super Sibs college tuition assistance scholarships provide financial assistance to high school seniors who are siblings of a child who has or had cancer. Applicants are required to articulate how being the sibling of a brother or sister with cancer has impacted their lives and how they will apply this learning to make a difference in the future. Application requirements are found on the website.

The Ulman Fund for Young Adults
www.ulmanfund.org

The Ulman Cancer Fund provides grants to young adults to assist them in continuing their education after being affected by cancer through their own diagnosis or the diagnosis of a family member.

Tom Coughlin Jay Fund Foundation Annual College Scholarship
www.tcjayfund.org/how-we-help

This college scholarship is awarded as an inspiration to a survivor in order that they may achieve their full potential. Residents of the Jacksonville, Florida area and New York Metropolitan area including Bergen, Essex, Hudson, Passiac and Union Counties in New Jersey who have had a diagnosis of leukemia or cancer prior to the age of 21 are eligible. Further details are found on the website.

 


Survivorship

 

Beyond the Cure
www.beyondthecure.org

Beyond the Cure was created for survivors of childhood cancer. Current research indicates that over two-thirds of childhood cancer survivors experience at least one "late effect" as a result of their disease or treatment. Its mission is to help childhood cancer survivors integrate the cancer experience into their new life as survivors and successfully handle the challenges that are ahead of them and to celebrate survivorship.

Cancer Survivors Network
www.csn.cancer.org

Sponsored by the American Cancer Society, the Cancer Survivors Network helps cancer survivors celebrate and share their lives and their own stories through discussion boards, chat rooms, blogs, audios, photos and resources.

Cancer Survivors Online
www.cancersurvivors.org

Cancer Survivors Online offers cancer information, resources, and support. It is designed for cancer patients, families, friends, and professionals. The site was created and is maintained by cancer survivors who share their knowledge and experiences.

 


Camps

 

Camp Good Days
www.campgooddays.org

Camp Good Days and Special Times, Inc. is dedicated to improving the quality of life for children, adults and families whose lives have been touched by cancer and other life challenges through summer camping experiences and year-round events and activities.

Camp Sunshine
www.campsunshine.org

Camp Sunshine, located in a beautiful Maine setting, provides families of children with a life-threatening illness a week-long camp experience at no charge.

Camp Sunrise
www.sunrisedaycamp.org

Sunrise Day Camp for children ages 3 through 16 is a day camp dedicated to children with cancer and their siblings. The camp is designed to meet the children’s emotional, social and recreational needs.

Double H Ranch
www.doublehranch.org
The Double H Ranch, co-founded by Charles R. Wood and Paul Newman, provides specialized programs and year-round support for children and their families dealing with a life-threatening illness.

First Descents
www.firstdescents.org

First Descents is an outdoor program for young adults whose mission is to address the emotional effects of cancer by empowering them to regain control of their lives. Young adults experience whitewater kayaking and other challenging adventure sports in a safe, fun and supportive environment in an effort to boost their self confidence.

Hole in the Wall Gang
www.holeinthewallgang.org

The Hole in the Wall Gang Camp, founded in 1988 by Paul Newman, is a residential summer camp and year-round center serving children and their families coping with cancer and other serious illnesses and conditions. All of the camp's services are provided free of charge.

 


 

Wish Foundations

 

Make-A-Wish Foundation
The Make-A-Wish Foundation grants the wishes of children with a life-threatening medical condition. Since 1980, Make-A-Wish has granted the wishes of more than 174,000 children around the world and currently has 65 chapters in the US.

The Marty Lyons Foundation
www.martylyonsfoundation.org

The Marty Lyons Foundation was established in 1982 to fulfill the special wishes of children aged 3 through 17 years old diagnosed with a terminal or life threatening illness and living in a region near a Marty Lyons chapter.

Starlight Children’s Foundation
www.starlight-newyork.org

The Starlight Foundation offers a comprehensive menu of outpatient, hospital-based and Web programs that provide ongoing support for children with critical and chronic illnesses and their families. Starlight brings together experts from pediatric health care, technology and entertainment to create programs that educate, entertain and inspire seriously ill children.

 


 

Other Special Services
 

The Blanket Fairy
www.theblanketfairy.weebly.com
The Blanket Fairy's mission is to make and donate as many blankets as she can to children with pediatric cancer.
 

Tiny Sparrow Foundation
tinysparrowfoundation.org
Tiny Sparrow is a non-profit organization dedicated to providing lasting memories through the art of photography to the families with a child who is facing a life-threatening illness.
 

Friends of Karen does not endorse, support, sanction or verify the information from the organizations' websites that appears in this Resources Section. Unless otherwise indicated, Friends of Karen has no affiliation with any of these organizations, and makes no representations or warranties with regard to their services.

 

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