Family Resources
A DIPG diagnosis can be devastating, but please know that you do not have to be on this journey alone. There are various foundations and organizations that provide financial and emotional support to parents and families battling DIPG. A majority of these organizations were started by and are run by the parents of children who battled DIPG.
Financial Support
Team Sam the Lion dedicates any donations received to fund DIPG research with the hope that one day there will be a cure for this devastating disease. The following organizations do the equally important work of supporting families in the fight with financial assistance.
Please keep in mind that many organizations will require an application or have certain criteria in order to qualify for aid.
Arms Wide Open provides monthly grants to families suffering hardship due to their child’s cancer diagnosis. Please complete and email this FORM to kristen@awoccf.org. Arms Wide Open also hosts Helping Hands, a crowdfunding platform that allows childhood cancer families to raise funds without paying credit card and platform fees.
Aubreigh’s Army Foundation 328 is a foundation that helps DIPG families with financial support for medical bills, including travel, accommodations, bills, and treatment. Click here for financial support application.
The Brooke Healey Foundation is a New Jersey based organization dedicated to fighting DIPG and other pediatric cancers. They fund research through the DIPG Collaborative, directly help families throughout the United States, and award scholarships. Click here for financial support application.
Cannonballs for Kayne provides financial assistance to families with children fighting DIPG/DMG.
Cory’s Crusaders provides financial assistance to the families of children fighting brain cancer in partnership with Dana-Farber | The Jimmy Fund.
Dragon Master Initiative The Dragon Master Initiative is proud to share and carry on Noah’s G.I.F.T.S. This program covers a portion of the travel expenses for families who enroll their children in cancer-related medical trials far from home. The Dragon Master Initiative wants to provide hope to the families of children affected by pediatric brain cancer who need care at a center of excellence. Families eligible for Noah’s G.I.F.T.S have a child who is entering treatment at a Member Institution of the Children’s Brain Tumor Network (CBTN) (click here to find a list of member institutions.) There may also be exceptions for children who reside in Alabama, Florida, Kansas, and Iowa.
Ethen Richardson Foundation (SC & GA applicants only) The mission is to continue sweet Ethen’s legacy of giving by providing financial and emotional support to the families of seriously and terminally ill children while also serving as witness to our Lord and Savior.
Gabriella’s Smile Foundation offers financial support for families with a child diagnosed with cancer in the San Antonio area prior to the child’s 18th birthday.
Hogs for the Cause fills the void between what families can afford and what insurance provides by providing financial resources to pediatric brain cancer patients in all fifty states.
Levi’s Legacy DIPG Foundation provides family financial assistance including help with special trips or wishes, paying bills, providing meals, etc.
Liv Like a Unicorn Foundation provides financial assistance to qualifying families in New York, New Jersey and Pennsylvania.
Lauren's Fight for Cure focuses on helping young adult patients impacted by DIPG and DMG. Young adult patients can receive support in the form of financial assistance, end of life gifts, and memory making experiences.
Live Like Bella - Financial support and family assistance with medical co-pays, basic needs such as gas, food, utilities, and memorial support.
Love, Chloe Foundation offers direct financial assistance, fuel cards, and the Monkey in My Chair program to Kansas families of children with cancer.
Marc JR Foundation – provides financial assistance for travel and housing for clinical trials.
Musella Foundation provides financial assistance to families who need help covering the cost of certain drugs used to treat Primary Malignant Brain Tumors (Grade 3 or 4) with their The Brain Tumor Drug Copayment Assistance Program.
Noah Brave Foundation provides financial assistance to families of children with a brain tumor.
PB&J Spreading Love - Provides help to families of children that have been diagnosed specifically with DIPG or children that have been put into hospice or palliative end of life care with less than 6 months to live.
Pediatric Brain Tumor Foundation has a program called The Butterfly Fund Financial Assistance Program that is an emergency assistance program, established in 2000, for qualifying families whose child has been diagnosed with a pediatric brain or spinal cord tumor and as a result are experiencing financial hardship.
Pennies from Heaven, Caleb's Foundation - Financial assistance for rent or mortgage payments, electric or medical bills, groceries, transportation, and more.
Princess Hailey’s Hope Foundation sends personalized care packages through their HUGS FROM HAILEY program to children who are battling DIPG to encourage them to keep fighting, and sends treats and toys to clinic to let these little warriors know how special they are. As funding allows, they also gift adaptive equipment for children fighting DIPG/DMG.
Their HOPS FROM HAILEY program provides gas gift cards to families of children diagnosed with DIPG/DMG who are enrolled in clinical trials/expanded access programs at hospitals that are at least 75 miles away from their homes.
Rally Foundation helps families with the financial struggles that come with a cancer diagnosis.
Reflections of Grace Foundation provides financial, emotional, and educational support for children and their families affected by pediatric brain cancer with an emphasis on DIPG/DMG
Super Sam Foundation offers Comfort Packs to children fighting cancer, their siblings, and caregivers.
Team Daniella's Childhood Cancer Foundation - Financial assistance for families
Team Buddy Forever Foundation- assists families of children diagnosed with DIPG with mortgage /rent payments, auto payments, utilities, food cards, fuel cards, and travel expenses to and from treatments Application for assistance can be found on their website.
The Morgan Adams Foundation provides financial assistance for families of patients in treatment at the Center for Cancer and Blood Disorders at either Children’s Hospital Colorado or Rocky Mountain Hospital for Children. All financial assistance applications must be submitted by a hospital social worker, care provider, or patient navigator.
Yuvaan Tiwari Foundation provides financial support to families in the U.S. with a child diagnosed with DMG/DIPG. Applicants may request support for travel to hospitals, accommodation, medical treatments, or a special gift/experience for the child.
DIPG Facebook Groups
The following Facebook groups offer a way to connect with other families facing a DIPG diagnosis.
DIPG (Diffuse Intrinsic Pontine Glioma) Awareness for Family and Friends this group is for families and friends of families looking for DIPG support.
DIPG Research - This group is not a support group but is geared towards sharing information on current research and clinical trials.
DIPG Parents Only Sanctuary - This is a private group just for parents of DIPG children. All DIPG parents are welcome.
DIPG / DMG Support Group for Families This group is for DIPG / DMG Parents or patients ONLY. This is created by and for parents who are dedicated to honoring our DIPG / DMG Warriors, supporting fellow DIPG / DMG families and celebrating the efforts being made to further DIPG / DMG research and support.
DIPG Angels Support Group for grieving families DIPG Angels Group is ONLY for IMMEDIATE FAMILY MEMBERS who have directly lost a child to DIPG.
DIPG Dads - This is a group for fathers that have or had a child with DIPG. It is a judgment free place to ask questions about anything related to DIPG including emotions, spouse issues, or stress.
DIPG Adults This group is to discuss pontine gliomas (DIPG) in adult patients. Everyone is welcome.
Grieving Parents of Children's Brain Tumor Foundation This is a supportive community for families who have lost a child to a brain or spinal cord tumor. Bereaved parents, caregivers and family members (adults only) are welcome to make connections, share information, post articles, and start discussions. While this is not exclusively DIPG parents there are many DIPG parents involved.
Online Support Groups
These online support groups offer a way to meet virtually on Zoom with other DIPG parents to share questions, concerns, and resources. These casual groups are designed to help parents build connections and gain information.
Children’s Brain Tumor Foundation / Marc Jr. Foundation
DIPG/DMG Parent Group
CBTF and the Marc Jr. Foundation host a virtual support group for parents whose children have been diagnosed with DIPG or DMG. This one of a kind program is the only DIPG/DMG Parent Group run by a Clinical Social Worker. Find support from other parents on this journey. Contact Regina Karchner at rkarchner@cbtf.org for more information.
Bereaved Parent DIPG/DMG Group
CBTF and the Marc Jr. Foundation host a virtual support group for bereaved parents and caregivers of children who had a DIPG/DMG diagnosis. Contact Jessica Elder at jelder@cbtf.org for more information or to join.
Pediatric Brain Tumor Foundation offers virtual support groups that provide a safe space for parents and caregivers to meet others like them, share their stories, and equip each other to manage the challenges presented by treatment and all that follows.
Donate
You can help us make a difference by donating today.