We are a research foundation, so all our funds go to finding cures for onco kids, but we are onco families too and want to help you. So here is a helpful listing of a variety of support resources for Onco Kids and Families. Financial support, camps, where to find wigs, and much more... check out the resources below.
Resources:
Find Clinical Trials:
Search the NIH Database for Clinical Trials
Wigs for Kids
Wig for Kids is a wonderful organization that creates beautiful wigs for children who could otherwise not afford a hair piece.Visit
Hip Hats with Hair Visit An organization that provides hats with human or synthetic hair attached for girls whose hair loss is due to chemotherapy.
Locks of Love An organization that provides hairpieces to financially disadvantaged children under age 18. Visit
Professional Photographs
Flashes of Hope provides 7,000 images a year to families, ask your social worker or Child Life Specialist if Flashes serves your hospital, or check here for upcoming shoots: Visit
Lodging
The Ronald McDonald House has facilities located around the world to help families stay near their children when hospitalized.
Visit
Assistance for Medications/Supplies
First Hand First Hand strives to change children’s lives around the world, one child at a time. Our mission: To directly impact the health status of a young life. The Foundation helps with clinical necessities (such as medication and surgeries), medical equipment and travel related to a child’s care. Additionally, the Foundation implores doctors, hospitals and equipment providers to discount their services below listed prices. Funding is distributed directly to the child’s immediate healthcare provider. http://www.cerner.com/firsthand
Managed RX Plans Managed RX Plans is a pharmacy that helps by paying for medication. For people who have insurance plans that qualify, they will pay for all co-pays, shipping and they will automatically send refills every month. If you set up home delivery for all meds through the insurance company, you simply need to ask your doctor to call in your scripts to this Managed RX pharmacy, and you won't have to pay for anything. Be aware that this service has a catch: your employer may be charged for the medication. http://managedrxplans.com/
Patient Advocacy
The Patient Advocate Foundation This is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. You can request a caseworker to solve your issues, such as getting free medication, funding for caregiver expenses or locating a cancer-experienced personal trainer for rehabilitation. http://www.patientadvocate.org
Help Scheduling your other kids, meals, and other needs
On-line scheduling help! Friends, family, and community members can log on to see where you need meal coverage, transportation help for your other children, and any other needs you may have. Takes the scheduling juggling act out of balancing your regular life and your Onco life! Lotsa Helping Hands is a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need. It's an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion. It's also a place to keep these "circles of community" informed with status updates, photo galleries, message boards,and more. www.lotsahelpinghands.org
Websites to keep loved ones informed
If your social worker has not already set up a page for your child, take a look through the Caring Bridge and Care Pages sites, they are a great way to keep loved ones informed. Subscribers to your child’s page receive automatic updates when you post an update.
Caringbridge: www.caringbridge.org
Carepages: www.carepages.org
Transportation
Mercy Medical lists many transportation programs for families with medically needed travel, Visit page Some of the organizations are region specific, but most are national.
Patient Travel http://www.patienttravel.org/contact.html Patient Travel, a charitable resource for families with medically needed travel including transportation to clinical trials.
Along Comes Hope https://alongcomeshope.com Provides financial assistance for transportation and housing needs.
Education
Educating children in treatment and beyond can be an issue your school is not familiar or comfortable with and either you or the school may need support information.
A Monkey in My Chair is a non-profit helping bridge the gap when your elementary and middle school age child cannot be in class. Through the program, each child is provided with a "monkey kit" which includes a big stuffed monkey that takes their place in school when they are unable to be there. The kits include the monkey with a backpack, a book to help teachers explain to students the situation their classmate is facing and how it affects them, teacher companion guide, along with other items that can be utilized by the child and/or their classmates. All kits are sent out at no cost to the families or hospitals. In addition to each "Monkey Kit," each child will be given online access to Monkey Message. Monkey Message is an online component that allows the sharing of pictures and documents to ensure the line of communication stays open between the patient and the classroom. Included in the Monkey Message portal are regular educational activities for the classroom and patients to do that help to foster interaction of students while incorporating key educational tools. Visit
Educating the Child with Cancer: A Guide for Parents and Teachers by Nancy Keene. Reach out to Candlelighters for guidance and a copy of this guide www.candlelighters.org or email them directly and request a copy of the book: staff@acco.org
Reentry to School- A Parent's Guide: Facilitating Your Child’s School Reentry produced by the Psychosocial Team at CHOP download
Reentry to School - An Educator's Guide: Welcoming the Child with Cancer Back to School An Educator's Guide produced by the Psychosocial Team at CHOP Download
Child’s Room Make-Over
Designing Dreams Foundation http://www.designingdreamsusa.com/
Gifts For Kids
Making Memories for Children on Hospice
The Clayton Dabney Foundation: http://www.claytondabney.org/aboutus.php The Clayton Dabney Foundation for Kids with Cancer provides needy families, with children in the last stages of terminal cancer, assistance in creating everlasting memories. The assistance is arranged through the parents and is anonymous to the child.
Grief
The Compassionate Friends, An organization in support of families and siblings. Click here to find a chapter near you: http://www.compassionatefriends.org/about_us.aspx
The Mothers in Sympathy and Support Foundation http://www.misschildren.org in support of families and siblings.
Camps
Children's Oncology Camping Association International https://www.cocai.org/
Lists contact information for all of the Children’s Oncology Camping Association member camps though out North America.
Camp Sunshine http://www.campsunshine.org/ Sebago Lake, Casco, Maine. This is a favorite among many families. The camp has the distinction of being the only program in the nation whose mission is to address the impact of a life threatening illness on every member of the immediate family—the child, the parents, and the siblings. The year-round program is free of charge to all families, and includes meals, 24-hour on-site medical and psychosocial support. Bereavement groups are also offered for families who have lost a child to an illness.
Hole in the Wall Gang Camp http://www.holeinthewallgang.org 565 Ashford Center Road, Ashford, CT. Founded in 1988 by Paul Newman. This camp is exceptional. Serves child only, not families.
Lighthouse Family Retreat http://www.lighthousefamilyretreat.org/ Retreats are held along the Florida panhandle between Destin and Panama City Beach in an area known as 30A. The Lighthouse Family Retreat offers a free five day beach vacation for the families of cancer patients to bring back some normalcy.
Ronald McDonald Camp http://www.philarmh.org/our-programs/ronald-mcdonald-camp/ The camp is located at Camp Timber Tops in Greeley, Pennsylvania in the Pocono Mountains, just a three hour drive from Philadelphia. Ronald McDonald Camp is a free week-long overnight camp for Juniors (Ages 7-12) and Seniors (Ages 13-17) who are currently undergoing treatment, or who have been treated for cancer. One sibling per camper is also allowed to attend for a $100 donation. Their “wellness center is staffed 24 hours a day by a medical and psycho/social staff of pediatric oncologists, nurses, and social workers from The Children's Hospital of Philadelphia.
Materials to Read
Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers (Patient Centered Guides) Click Here to Order
Childhood Leukemia: A Guide for Families, Friends & Caregivers (Childhood Cancer Guides) Click Here to Order
COG Family Handbook Download or order a hard copy
Oncology Patient Resource Guide, (written by NJ cancer moms)
Financial Assistance & Support:
The National Children’s Cancer Society
Their mission is to improve the quality of life for children with cancer and their families worldwide. They serve as a financial, emotional, educational and medical resource for those in need at every stage of their illness and recovery. In the United States, we ease the financial burdens that accompany major illness; give crucial support and comfort; and address the challenges of survivorship. http://www.children-cancer.org
Children's Cancer Fund of America, Inc. Once you qualify, you may receive $50/month, and will need to re-apply every 6 months for continued assistance. http://www.ccfoa.org/home.html
Cancer Care https://www.cancercare.org/financial_assistance
Social Security Benefits http://www.socialsecurity.gov/ The Supplemental Security Income (SSI) program (http://www.socialsecurity.gov/pgm/ssi.htm ) pays benefits to disabled adults and children who have limited income and resources.” To apply for aid, visit the website, click on the SSI tab at the top, then click on ‘apply for a child. To apply for a child you will need to complete an Application for SSI and a Child Disability Report. The report collects information about the child’s disabling condition and how it 31 affects his/her ability to function. More Info
Andrew McDonough B+ Foundation, B+ is an outstanding organization which provides emotional and financial support for families. The Andrew McDonough B+ Foundation honors the memory of 14-year-old Andrew, who sadly earned his wings after a short, but inspiring battle with AML. They “do good” by providing financial and emotional support to families dealing with childhood cancer as well as funding childhood cancer research grants. They hope to spread Andrew’s message to “be positive” despite the challenges you face. Apply here
Max Cure Foundation http://www.maxcure.org/
Francesco Loccisano Memorial Foundation / Frankie’s Mission http://www.frankiesmission.org/
Local Family Financial Support Organizations-- by State/Region
North East:
Grayson Saves Foundation http://graysonsaves.org/
Get Well Gabby Foundation http://getwellgabby.org/ Eastern PA and DE
This Star Won’t Go Out http://www.tswgo.org/ New England
NY/NJ/CA/New England: The Family Reach Foundation provides financial and other support to families facing cancer. Family Reach works directly with hospitals. Ask your Social Worker for assistance from Family Reach, and if your hospital does not have an affiliation with Family Reach, you can email them through their website: www.familyreach.org .
New Jersey:
The Beauty Foundation http://www.beautyfoundationnj.com/
Emmanuel Cancer Foundation www.emmanuelcancer.org/
The Frances Foundation www.francesfoundation.net
Fighting Children’s Cancer Foundation (for families near Fairfield, NJ) http://fccf.info/assets/Application-final-2015.pdf
Hugs for Brady http://www.hugsforbrady.org/
The Mya Lin Terry Foundation in Monmouth County: application and consent form website: http://themyalinterryfoundation.org/
Stomp the Monster http://stompthemonster.org/application-for-support/
Thomas Peterpaul Foundation http://www.thomaspeterpaul.com/ (go through your social worker)
NJ Family Care http://www.njfamilycare.org/ NJ FamilyCare is for families who do not have available or affordable employer insurance, and cannot afford to pay the high cost of private health insurance”. Check their website for additional eligibility requirements and an application.
Catastrophic Illness in Children Relief Fund of NJ http://www.state.nj.us/humanservices/cicrf/home/ Financial assistance program for New Jersey Families whose children have an illness or condition otherwise uncovered by insurance, State or Federal programs, or other source, such as fundraising.
NJ Medicaid http://www.nj.gov/humanservices/dmahs/clients/medicaid/ If your income disqualifies you, you should ask about a Katie Beckett Waiver http://www.patientadvocate.org/index.php?p=534 ). The Patient Advocate Foundation explains that “also known as the Deeming Waiver, or the 2176 Model Waiver, the Katie Beckett Waiver is a federal waiver that is intended for children from birth to eighteen years of age with a chronic disability. It entitles children to Medicaid that would not otherwise qualify due to their parent’s financial status.” You can read more about ‘Deeming’ and when a ‘Child Can get Medicaid’ at http://www.socialsecurity.gov/ssi/text-child-ussi.htm
FLA:
Base Camp Foundation Visit Base Camp Foundation provides a year-round base of support for children and families who are facing the challenge of living with cancer and other life-threatening hematological illnesses.
American Foundation for Children with Cancer Visit Provides financial assistance to families with children who are diagnosed with cancer in Miami and surrounding areas.
Caleb’s Crusade Visit For families in SW Florida
IL:
AshleyCan Pediatric Cancer Foundation Visit
PA:
Little Eric’s Foundation Visit (Luzerne and Lackawanna Counties)
Joey’s Eagles Visit (Stroudsburg Area)
NC:
Lift Up Foundation Visit
Addison Bryan Foundation Visit (Raleigh-Durham area) Go through your social worker to apply for assistance.
WI/MI:
Our Kids With Cancer Visit Support for families with children with cancer, and for survivors of pediatric cancer in North Eastern Wisconsin and Michigan’s Upper Peninsula.
Minn:
Miracles of Mitch Foundation http://www.miraclesofmitchfoundation.org
NY:
A Mother’s Kiss http://www.amotherskiss.org/ Provides emotional and financial support to the families of childhood cancer patients in the Long Island and Metro-New York area.
Rema Hort Mann Foundation - greater New York Metropolitan region http://www.rhmfoundation.org/
Visit the Hope Portal to view more resources
If you would like to add your organization to the list of foundations who provide family support, please contact us.
