DIPG Support
A Diagnosis of DIPG can be devastating, but it is important to know that you don't have to go at it alone. There are various foundations and organizations that provide financial, family, and medical support to patients and parents battling DIPG – and a majority of these organizations were started and are run by the parents of children who battled DIPG.
In addition, we have created a guide to help you navigate the beginning of this journey and inform you of where to go next.
Family Support
In addition to raising funds for pediatric cancer research, The Cure Starts Now offers a variety of programs to help both families and patients in the battle against DIPG.
Whether you are recently in the fight, or just want to honor your child who is no longer battling, DIPG Warrior is your go-to DIPG support program. Get personalized one-on-one support or connect with over 450 other DIPG families.
The DIPG Support Group on Facebook is a great resource for families who have been impacted by DIPG. This group is an open forum to ask questions and learn about the latest DIPG resources and treatment from others that have experience with DIPG.
Medical Support
Receiving a diagnosis of DIPG and going through treatment are difficult for patients and their families. The Cure Starts Now, in collaboration with the DIPG Collaborative members, completely fund the DIPG Registry and the European SIOPE Registry. The DIPG Registry and website provides information about ongoing and planned research, as well as contact information for DIPG experts if you or your doctor would like to arrange a consultation.
Financial Support
Battling DIPG puts a heavy burden on families. From medical bills to travel, it can all be overwhelming. Various DIPG Collaborative partners offer financial assistance to families of children with brain cancer and are listed below.
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 through out the United States, and award scholarships.
Reflections Of Grace Foundation offers financial assistance grants to families of children with brain cancer.
The Love, Chloe Foundation offers financial assistance to families in Central Kansas. This support is available to children undergoing treatment for any form of cancer.
Aidan's Avengers family support program provides financial support to families of children diagnosed with brain tumors in PA, NJ, DE, MD and NY.
Lauren's Fight for Cure is a Southeast Indiana Foundation that offers young adults diagnosed with DIPG end of life gifts or financial assistance grants. For those diagnosed after their 18th birthday, they may be considered for a wish trip.
The Brain Tumor Drug Copayment Assistance Program, a program of the Musella Foundation For Brain Tumor Research & Information, Inc., 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).
The 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.
Miscellaneous Support
Untraditional support can be very special and provide DIPG families with some unique opportunities. Various partners have offered their services below.
The Gold Hope Project is a group of photographers that gives families battling a pediatric cancer diagnosis a free professional portrait session for their warriors.
Cure Brain Cancer Foundation launched the National Advocacy Service (NAS) in collaboration with Peace of Mind Foundation. The NAS is available for Australian individuals and families affected by brain cancer and assists by helping them access support services such as the National Disability Insurance Scheme (NDIS), Centrelink and other government programs.
RUN DIPG is founded by Associate Professor Matt Dun and Dr Phoebe Hindley (Dun). The unique understanding of Australian medical system and global research landscape yet being DIPG parents is how RUN DIPG can support.