We Support Families Every Step of the Way.
We believe that no family should have to fight brain cancer alone. Although each journey is unique, there is a wealth of resources and community support available to every family. Our goal is to help you get the best treatment and quality of life for your child so that you can enjoy many more tomorrows together.
As an immediate step following diagnosis, we recommend getting a second opinion from a leading hospital and connecting with other parents and support groups. Treatment should be started as quickly as possible to control tumor growth.
The diagnosis is devastating, the choices are impossible, but hope springs eternal. We’ve been there, and we’re here for you.
If your child has been diagnosed with DMG/DIPG or any other type of fatal brain cancer, we can provide financial assistance to help offset medical expenses, including travel, accommodation, and treatments. We would also be honored to cover expenses for a special gift or experience for your child. Any family with a child diagnosed prior to the child’s 18th birthday is eligible for consideration. Child may be newly diagnosed, under treatment or in progression. Applicant and child must reside in the United States.
RESOURCES
Although the Yuvaan Tiwari Foundation is not directly affiliated with any of the organizations listed below, we believe they can be invaluable sources of information and support for families that are navigating DMG/DIPG and other pediatric brain cancers.
My DIPG Navigator offers a free nurse navigator program designed to give families individualized and reliable guidance throughout the family’s entire DIPG/DMG journey. Nurses with years of experience in pediatric oncology will directly help you better understand the diagnosis and treatment options, connect you to the proper resources you need, and support you any time. This service is completely free for any patient treated in the United States.
Clinical trials are scientific research studies of the safety and efficacy of a new drug or other treatment, conducted on human volunteers. Clinical trials are standard practice in cancer treatment and about 60% of children with cancer are enrolled in a trial. The U.S. National Library of Medicine provides a database of privately and publicly funded clinical studies conducted around the world. Search the database for actively recruiting studies that your child may be able to participate in or learn about new interventions/treatments that are being considered.
If your child is not able or eligible to participate in a clinical trial, compassionate use of an investigational drug through an expanded access program (EAP) may be an option. Discuss with your physician if your child can participate in an existing EAP or if you will need to apply for single-patient access.
The National Cancer Institute (NCI) is the federal government's principal agency for cancer research and training. This site provides accurate, up-to-date, comprehensive information on all types of cancer, research and clinical trials.
The Children’s Oncology Group Family Handbook
The Children’s Oncology Group Family Handbook provides families with reliable information about treatment, support, and follow-up care for children with cancer.
The International DIPG/DMG Registry is a collaborative effort to centralize and standardize the collection of clinical data and tumor samples from DIPG and DMG patients. The registry provides access to consultations from international experts as well as information about current treatment approaches, clinical trials and research projects.
The DIPG/DMG Resource Network offers information regarding DIPG/DMG research, treatment, and prognosis.
The Cure Starts Now is a pediatric brain tumor research charity built by families to support cancer families, including DIPG/DMG families, in their fight.
The Pediatric Brain Tumor Foundation’s Butterfly Fund provides emergency financial assistance to families of children in treatment at partnering medical facilities.
Make-A-Wish® grants life-changing wishes for children ages 2-18 with critical illnesses.
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