- whenimbetter
- info@whenimbetter.org
- My Account
Fund cutting edge research and clinical trials that will lead to a cure for DIPG/DMG, while also advocating for those children battling and their families.
Our story began where everyone who learns of DIPG/DMG begins. Unknowing, scared, and skeptically hopeful. It was a journey that we were destined to endure.
True to the name, they approach a fatal illness with the courage and will power that is only talked about in legends. They learn their fate, but they endure.
4% of the NCI budget is directed to pediatric cancer. All pediatric cancers (brain cancer, leukemia, lymphoma, neuroblastoma, bone & tissue etc.)
Diffuse Intrinsic Pontine Glioma, is a type of brain tumor that arises in an area called the pons.
Diffuse
The tumor has ill-defined borders and spreads quickly into healthy brain tissue.
Intrinsic
Refers to the area that the tumor arises, which would be the pons in this medical term
Pontine
Indicates that the tumor is found in the pons, a critical part of the brainstem responsible for functions like breathing, sleeping, bladder control, and balance.
Glioma
A glioma is a type of tumor that originates in the glial cells of the brain or spinal cord. Glial cells play a crucial role in supporting and nourishing nerve cells. When a glioma grows, it forms a mass of cells called a tumor.
Diffuse Midline Glioma, is a newer term that may replace the term DIPG over the next few years. Medicine is always evolving and the term DMG is now being used to represent all gliomas in the brain, not just the pons. Gliomas can arise in many parts of the brain, like the thalamus, pons, or even the spinal cord. What has changed the term is the ability to perform biopsies of these tumors at less and less risk. Once biopsied, most gliomas will have the H3.3 mutation, which then classifies these tumors a grade IV and highly lethal. Once the H3.3 mutation is determined, these gliomas are now being referred to as DMG. Instead of using the term DIPG, the child will now be diagnosed with a DMG of the pons.
Most families in the DIPG world feel that it is important to understand this change so that there is no confusion as the term evolves. It is important to understand that DMG will represent the same tumor, because of important funding from our communities and the government to fight this monster.
Like most most children with DIPG, Finn only lived 12 more months. He passed away on December 3, 2023.
