Resources for Rhabdo Families
Below is a list of resources that we feel can be helpful to families starting out on their Rhabdo ‘Journey’ as well as those who have or are currently going through it. The Journey is not an easy one, and the various resources on this page could assist in some important areas.
This page is always a work in progress. If you are aware of any additional resource that you feel should be listed here, please let me know.
Focus On Rhabdo Facebook Pages and Groups
Focus On Rhabdo Facebook Page – https://www.facebook.com/focusonrhabdo/
Focus On Rhabdo Public Group – https://www.facebook.com/groups/focusonrhabdo/
Focus On Rhabdo Group – Rhabdo Survivors – https://www.facebook.com/groups/101528804029760/?ref=br_rs
Focus On Rhabdo Group – Chemo Side Effects – https://www.facebook.com/groups/182546215678616/
Pediatric Rhabdomyosarcoma Support Group – https://www.facebook.com/groups/58420247707/
Rhabdomyosarcoma Family Research Group – https://www.facebook.com/groups/409601769497102/
Rhabdomyosarcoma Journeys of Hope and Encouragement – https://www.facebook.com/groups/731881336903769/
Parents Who Lost Their Kids to Rhabdomyosarcoma – https://www.facebook.com/groups/984567434954264/
Rhabdomyosarcoma Info – Fight It & Inform Others – https://www.facebook.com/groups/4416511994/about/
Rhabdomyosarcoma – https://www.facebook.com/groups/333666080041266/about/
Rhabdomyosarcoma Family Research Group – https://www.facebook.com/groups/409601769497102/
Team Fortitude – https://www.facebook.com/groups/552589594892432/
Embryonal Rhabdomyosarcoma and other rare cancers – https://www.facebook.com/groups/195942770433098/
Rhabdomyosarcoma Cancer Awareness – https://www.facebook.com/groups/106161276081669/about/
Rhabdomyosarcoma Support Group (UK) – https://www.facebook.com/groups/187378267965361/
Rhabdomyosarcoma Survivors – https://www.facebook.com/groups/111008402296832/about/
Online Support Groups
Focus on Rhabdo Online/Video Support Group – a global meeting for all Rhabdo families, researchers, and clinicians. Meets online on the last Thursday of the month. Check on the Focus On Rhabdo Facebook Page and Group for registration details. Attend via your computer, phone, or tablet. Free and open to all.
American Childhood Cancer Organization online community http://www.acco.org/Information/Support/OnlineSupportGroups.aspx
Smart Patients https://www.smartpatients.com/ Smart Patients is an online community where cancer patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience.
Stupidcancer – www.stupidcancer.org Stupid Cancer is a non-profit organization that empowers young adults affected by cancer through innovative and award-winning programs and services
Chai Lifeline – https://www.chailifeline.org/
Chai Lifeline has grown from a small, community-based summer camp program for children with cancer to one of the preeminent international health support networks supporting seriously ill children, their families, and communities.
Chai Lifeline’s programs and services meet the unique emotional, social, and financial needs of families living with serious pediatric illness or loss.
From the moment of diagnosis or trauma, Chai Lifeline’s professionals and trained, compassionate volunteers step in to help restore equilibrium and bring joy and hope back into lives devastated by medical crises and illness.
Courageous Parents Network – https://courageousparentsnetwork.org/
Courageous Parents Network is a destination created by families, for families, to support and strengthen them as they care for very sick children. It is about providing parents with the skills, tools and virtual support they need to cope and adapt during their child’s illness journey so as to make the impossible possible.
MaxLove Project – http://www.maxloveproject.org/
MaxLove Project is an innovative nonprofit organization that advocates for the integration of evidence-based quality of life care and integrative medicine into standard pediatric cancer care. We do this through our support of pioneering cancer research, family-centered programs, easy-to-understand health education, and support for complementary and preventive therapies in healthcare settings. Each of these initiatives aims to improve quality of life and lower health risks for childhood cancer patients, survivors, and their families.
The SamFund – http://www.thesamfund.org/
We provide support to young adults who are struggling financially due to cancer. Twice a year, we give grants to survivors aged 21-39 to help with medical bills, living expenses, and much more. We also offer free online support and education through our Webinar series, “Moving Forward With Your Financial Health,” Finances 101 Toolkit program, and blog. In short, we recognize that cancer isn’t free and make it okay for young adults to ask for help.
Listing of Sarcoma Centers Around the World – Sarcoma Centers and Specialists From the Liddy Shriver Sarcoma Initiative: The importance of Rhabdomyosarcoma being treated in a specialized sarcoma center cannot be stated strongly enough. These centers have the interdisciplinary teams and the needed experience working with these rare diseases. Always ask the question – “How many cases of Rhabdomyosarcoma have you treated?” Sarcoma Foundation of America – http://sarcomahelp.org/sarcoma-centers.html#tpm1_3 Sarcoma Information Links
Books, Publications and Other Resources
Childhood Cancer Guides http://www.childhoodcancerguides.org Childhood Cancer Guides is a 501(c)(3)nonprofit that publishes award-winning books for families of kids with cancer and survivors of childhood cancer. Our books are a mix of accurate medical information that is reviewed by renowned experts in pediatric oncology and true stories—practical, poignant, moving, funny—from hundreds of children with cancer, their siblings, and their parents. Our guides empower families with knowledge, practical suggestions, emotional support, and helpful resources.
Rhabdomyosarcoma – A booklet for parents. What you need to know. – Parent’s Booklet http://www.rhabdomyosarcomabooklet.org.uk/docs/rhabdobklt.pdf This website has been created to enable parents and families whose children have been diagnosed with rhabdomyosarcoma to access a booklet about the condition. The booklet was written by Dianne Haley whose daughter Claire was diagnosed and treated for rhabdomyosarcoma in 2004/05 at the Royal Hospital for Sick Children in Edinburgh. The booklet was updated in 2012
The ESUN Guide for the Newly Diagnosed – The Liddy Shriver Sarcoma Initiative – ESUN Guide http://sarcomahelp.org/guides/newly_diagnosed.html The Liddy Shriver Sarcoma Initiative provides educational resources and personal support for everyone dealing with sarcoma. Because we’ve been publishing articles written by sarcoma specialists and advocates for nearly 10 years, there is much information to be found at SarcomaHelp.org
US National Library of Medicine – http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002402/ PubMed Health article on Rhabdomyosarcoma (somewhat technical)
National Cancer Institute at the National Institutes of Health – http://www.cancer.gov/cancertopics/pdq/treatment/childrhabdomyosarcoma/Patient Article on Childhood Rhabdomyosarcoma – Patients Version
National Cancer Institute at the National Institutes of Health – http://www.cancer.gov/cancertopics/pdq/treatment/childrhabdomyosarcoma/HealthProfessional Article on Childhood Rhabdomyosarcoma – Health Professional Version
Ped-Onc Resource Center – Rhabdomyosarcoma – http://www.ped-onc.org/diseases/rhabdo.html Resources and information for parents of children with cancer . . . by parents of children with cancer.
Ped-Onc Resource Center – Signs of Childhood Cancer – http://www.ped-onc.org/diseases/SOCC.html#rhabdo Childhood cancer is rare. It is unlikely that your child will develop cancer. Still, as a parent, you need to be aware of the symptoms of childhood cancer. (Scroll down to section on Rhabdo)
CureSearch for Children’s Cancer – http://www.curesearch.org/coping-with-cancer/ Offers some basic guidance for patients, parents, siblings, extended family members, friends, neighbors, teachers and many others who care about a child with cancer.
American Childhood Cancer Organization – https://acco.org/Information/Resources/Books.aspx Free books for Families of Children with Cancer
Alan Ehrlich, The Global Listening Centre & Focus On Rhabdo – a paper titled “Collateral Damage: An Overview of Hearing Loss and Listening Disorders in Pediatric Cancer Treatment” – Collateral Damage (PDF)
First Hand Foundation – https://applications.cerner.com/firsthand/ First Hand is a not-for-profit, 501(c)(3) organization that provides funding for individual children with health-related needs when insurance and other financial resources have been exhausted. Last year, through the generosity of people like you, more than $2 million was donated to the foundation. We turned around and spent all of it on improving the health status of children around the world
Childhood Cancer Society – http://www.childhoodcancersociety.org/ Childhood Cancer Society (CCS) began with the vision of a 16-year-old high school student who realized that having family around him while he was being evaluated for childhood leukemia created the support that he needed to cope. The Childhood Cancer Society provides funds for medical care, accommodations, and travel expenses to make it possible for families in need to obtain the necessary care for their children and to be with them when out of town hospitalization and treatment is required.
Solving Kids’ Cancer – http://solvingkidscancer.org/ Find, fund, and manage solutions to improve survivorship
National GRACE Foundation – http://graceamerica.org/ The National GRACE Foundation provides FREE college admissions and financial aid counseling to pediatric cancer patients and survivors.
National Children’s Cancer Society – http://nationalchildrenscancersociety.org/# We serve as a financial, emotional, and educational resource for families that can’t make ends meet when their child is diagnosed with cancer.
Travel Assistance – By Auto
Road to Recovery – American Cancer Society – https://www.cancer.org/treatment/support-programs-and-services/road-to-recovery.html
Find a Ride Near You – 1-800-227-2345
Every day thousands of cancer patients need a ride to treatment, but some may not have a way to get there. The American Cancer Society Road To Recovery program provides transportation to and from treatment for people with cancer who do not have a ride or are unable to drive themselves.
LYFT – Using the Lyft mobile app – https://www.lyft.com/rider
Ride sharing giant Lyft is offering cancer patients free rides—or at least effectively free for riders—to and from their treatments in 10 major U.S. cities, including Los Angeles, Philadelphia, Houston, Miami, Las Vegas, Cincinnati, Denver, St. Louis, and Atlanta.
The rides are part of an existing Lyft collaboration with the American Cancer Society (ACS), which will be covering the cost of the rides.
Travel Assistance – Private Aircraft
Corporate Angel Network
Corporate Angel Network is the only charitable organization whose sole mission is to transport cancer patients to the hospital at which they need to be in order to receive a specialized form of treatment. Simply put, we pair empty seats – on both private and corporate planes – with qualified patients who need the rides… at no cost. This not only improves the patients’ chances of survival but at the same time, it reduces their emotional stress, physical discomfort, and financial burden.
Angel Flight is the name used by a number of groups whose members provide free air transportation for passengers in need of medical treatment far from home and perform other missions of community service.
Angel Flight – South Central
Helping people in need of free air transportation for medical and humanitarian purposes. Serving Texas, Oklahoma, Louisiana, Arkansas and New Mexico.
Angel Flight – West
Angel Flight West is a nonprofit, volunteer-driven organization that arranges free, non-emergency air travel for children and adults with serious medical conditions and other compelling needs. Our network of 1,400+ pilots throughout the 13 western states donate their aircraft, piloting skills, and all flying costs to help families in need, enabling them to receive vital treatment that might otherwise be inaccessible because of financial, medical, or geographic limitations.
Angel Flight – Oklahoma
Angel Flight Oklahoma was created by a group of pilots who believe in the benefit of volunteering. We strive to keep all aspects of the organization volunteer. We are a non-profit charitable organization of pilots, volunteers, and friends that are proud to serve the heartland area of Oklahoma, Texas, Arkansas, Missouri, and Kansas. We will arrange free air transportation for any legitimate, charitable, medically related need. This service is available to individuals and to health care organizations. We will also arrange transportation of those people who are financially distressed, or who are in a time-critical, non-emergency situation due to their medical condition.
Angel Flight Soars
Angel Flight SoarsTM arranges free air transportation for people who need to travel to receive lifesaving medical treatment, but lack the means. We believe illness isn’t stopped by boundaries and cures shouldn’t be either – whether the boundaries are geographic or monetary. We help families focus on getting better instead of worrying about how to get there. That’s why we coordinate 9 missions a day, 7 days a week, 365 days a year.
ANGEL FLIGHT SOARS is the original volunteer pilot organization serving those who reside in, are traveling to or through the states of: • Georgia • Alabama • Mississippi • Tennessee • North Carolina • South Carolina
Angel Flight – NorthEast
Since Angel Flight Northeast’s first flight in 1996, our mission coordinators have scheduled more than 75,000 flights. Our 1,000+ Volunteer Pilots have flown over 14 million miles providing more than 77,000 patients and their families free air transportation to medical care. As well, our 200+ Earth Angels are there to greet the patients and their families with open arms and transport them to and from their destinations. Angel Flight Northeast’s main service area covers 9 states: Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont.
Angel Flight – East
Angel Flight East (AFE) is a nonprofit organization dedicated to serving the community by facilitating free air transportation to children and adults in need of medical treatment far from home and other compelling needs. AFE’s footprint is Virginia to Ohio to Maine and for destinations beyond that; we link up with other volunteer pilot organizations.
Angel Flight – Central
Angel Flight Central (AFC) is a volunteer non-profit 501(c)(3) organization whose mission it is to “Serve people in need by arranging charitable flights for health care or other humanitarian purposes.”
Today, AFC volunteers and supporters throughout the Midwest have made possible over 25,000 flights “free of charge” covering 9 million miles. We are helping thousands of families access specialized health care, special needs camps, and other destinations for disaster response efforts and compassionate reasons.
Angel Flight Central, in the heart of the mid-west, collaborating coast-to-coast as we give hope wings every day!
Other Resources for all childhood, adolescent and young adult cancers
The Tiny Sparrow Foundation – http://tinysparrowfoundation.org
We are a non-profit organization dedicated to providing lasting memories through the beautiful art of photography to the families within the United States of America with children who are facing life threatening illnesses.
With the help of photographers nationwide, we are able to give a beautiful album that will carry the love, joy and everlasting memory of each individual family.
Monkey In My Chair – http://www.monkeyinmychair.org/
Along with the diagnosis of a serious illness comes time away from school. Whether it is only a day here and there or maybe weeks or months at a time, this can be hard for the child and their classmates.
Monkey in My Chair is a program originally developed in honor of Chloe Watson Feyerherm for pre-school and elementary aged children who are away from school because of a cancer diagnosis. As a result of Chloe’s experience, her mother, teachers and community got together to develop the Monkey In My Chair program through the efforts of their newly established charity, the Love, Chloe Foundation. In 2011, in an attempt to have the program complement cancer research efforts, the Love, Chloe Foundation partnered with The Cure Starts Now Foundation to offer the program to a wider audience, thus increasing both awareness and donations to not only support the program but also fund the cure for cancer.
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.
Gabe’s Chemo Duck Program – http://chemoduck.org/
Gabe’s Chemo Duck Program™ is a unique educational program offered by Gabe’s My Heart, a nonprofit organization that supports children and families living with cancer. Created by a mother for her son Gabe when he was diagnosed with cancer at a young age, Chemo Duck is a soft, cuddly companion that provides huggable hope and alleviates fear and anxiety. Developed with the help of child life specialists and medical professionals, the Chemo Duck Program helps introduce children and families to their new life and encourages healing through the power of play therapy.
Peach’s Neet Feet – http://peachsneetfeet.com/
The mission of Peach’s Neet Feet (PNF) is to provide tangible ways to be compassionate, and inspire others to engage in acts of kindness. This is accomplished by providing services that include, but are not limited to: painting and distributing personalized shoes to children experiencing hardship in the form of chronic illness, and disability; organizing and sending care packages to families with children inpatient or in hospice; providing workshops for school aged children to encourage kindness; and providing supportive art programs for children and the elderly.
Chemo Angles – http://chemoangels.wix.com/chemo-angels-1/
The Chemo Angels program offers support to those who find themselves in the most challenging situation of their lives – battling a cancer diagnosis and undergoing IV chemo treatment.
Our volunteers support their “buddy” throughout their journey with cards, uplifting messages, supportive words and lots of positive energy. The encouragement our Angels provide helps give patients the comfort and confidence of knowing they are not alone in their fight.
The goal of Chemo Angels is to help fuel a positive attitude and aid in the road to recovery. Volunteers find that providing emotional support is a most rewarding experience.
SuperSibs! – http://www.supersibs.org/
At Alex’s Lemonade Stand Foundation, we know that childhood cancer affects the whole family, not only the child who receives the diagnosis.
Brothers and sisters of cancer patients often face fear, anxiety, changes in daily routines, worry, grief and even jealousy as their family is thrown into the emotional turmoil of managing a child’s cancer treatment.
SuperSibs, a program of Alex’s Lemonade Stand Foundation, is dedicated to comforting, encouraging, and empowering siblings during their family’s battle against childhood cancer, so these children and teens can face the future with courage and hope.
Keep Kids Connected – http://www.keepkidsconnected.org/
Keep Kids Connected was created to help keep kids connected to their family and friends while they are undergoing treatment for cancer or other life-threatening illnesses. The organization was inspired by Caitlyn Mortus who is, herself, a cancer survivor.
Wigs for Kids – http://www.wigsforkids.org/
For over 30 years, Wigs for Kids has been providing Hair Replacement Systems and support for children who have lost their hair due to chemotherapy, radiation therapy, Alopecia, Trichotillomania, burns and other medical issues at no cost to children or their families.The effects of hair loss go deeper than just a change in a child’s outward appearance. Hair loss can erode a child’s self-confidence and limit them from experiencing life the way children should. With an injured self-image, a child’s attitude toward treatment and their physical response to it can be negatively affected also. Wigs for Kids helps children suffering from hair loss look themselves and live their lives.Because we never charge families for hair replacements, we depend on generous people like you that want to help donate hair for cancer and other sources of hair loss. In order to help children who have suffered from hair loss due to complications such as Alopecia in children and other medical issues, a monetary or hair donation is always appreciated.
Sunshine Kids – http://www.sunshinekids.org
The Sunshine Kids is a non-profit organization dedicated to children with cancer. Established in 1982, we are committed to providing positive group activities and emotional support for young cancer patients. The Sunshine Kids provides a variety of programs and events, free of charge, for Kids who are receiving cancer treatments in hospitals across North America.