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When 40 Police Departments Surprised Emma, A 7-Year-Old Battling DIPG

Emma Mertens, DIPG

Sometimes it takes only one act of kindness and caring to change a person’s life.– Jackie Chan

Sometimes our lives take unexpected turns, turns that we are not prepared for. In such times even a tiny bit of happiness gives us the strength to brave the storm. Kindness is the best form of medicine.

For Emma Mertens, a 7-year-old girl from Wisconsin who is battling DIPG, that happiness came in the form of 40 police officers and dogs.

In January this year, Emma was diagnosed with DIPG. Like a child unaware of what is happening to her, Emma was upset. There was something that would cheer Emma up and that was dogs. Her love for dogs was unparalleled. A friend of the family thought sending her a letter from her dog would cheer Emma up. She asked people through various social media platforms to send her photos and letters from their dogs and people from different corners of the world did their bit to make her happy.

But the K-9 officers from 40 police departments went a step ahead to make Emma smile. Surprised on seeing so many dogs and people – all just there for her, with some having driven for about three hours, Emma was overjoyed. These small acts of kindness helped Emma and her family get through the painful phase in their lives.

While the treatment of DIPG and our efforts to find a cure for it are important, what is also important is to lift a child’s spirits and make them smile. A simple act of kindness can go a long way in making the journey of battling DIPG a little easier for the children and their families.

This is just one story, Emma is just one of the faces of DIPG. There are many children out there who need a little bit of support and help. At Marc Jr Foundation, we have adopted a multi-fold approach to battle DIPG and one day, triumph over it. Are you with us?

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Sources (1,2,3)

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The Future OF DIPG: Research & Hope

Future of DIPG, DIPG

The 20th century produced a cure for a lot of diseases that were once considered to be incurable like Diptheria or Smallpox. The 21st century is more advanced with several scientific breakthroughs happening every now and then. At Marc Jr Foundation we believe that the cure for DIPG is not far. We have reasons to believe so.

Hundreds of clinical trials have been conducted to attempt to find a cure for DIPG. Not all of them have been successful but some of them provided us vital insights about the epigenetic and genetic mutations of DIPG. Mutations in the DNA are the cause of DIPG and the discovery of Histone H 3.3 and H 3.1 (highly alkaline proteins that order the DNA into structural units called nucleosomes) has been instrumental in understanding DIPG.

In March 2019, researchers at the University of Michigan were able to secure a grant of $429,000 to study an experimental gene therapy. The therapy would be able to enable a person’s immune system to fight the cancer cells if it works. It looks promising.

Future of DIPG, DIPG
The future of DIPG looks promising.

In another study titled “See the Change,” researchers at the Genomic Research Institute have been working on a method called “liquid biopsy” through which better diagnosis and monitoring of the DIPG tumor can be made possible. It can also help track DIPG in real time and measure the impact of treatment on the tumor much before MRI scans can.

A research, supported by Michigan Medicine’s Pediatric Brain Tumor Research Initiative found that a gene mutation known as PTEN plays an important role in DIPG’s course in the brain stem. Targetting PTEN may be the path to finding a cure.

Scientists at the Feinberg School of Medicine of Northwestern University have found a molecule that could stop the development of DIPG. “BET bromodomain inhibitor,” the molecule used in this study, was effective in stopping the growth of the tumor. More trials are yet to be done to prove its efficacy.

The “BRAVO trial” where the clinical effects of a personalized dendritic cell vaccine made from the person’s tumor RNA combined with adoptive T cell therapy are being studied, is also promising.

The future is not so bleak. We urge you to keep believing and keep spreading awareness. It’s all about doing your bit. It’s how author Isabel Allende said, “We only have what we give.”

More such studies can be carried out and our aim to find a cure for DIPG can be attained should we all join hands together for the cause. Marc Jr Foundation is funding research to find a cure. Join our movement.

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Sources: 1, 2, 3, 4, 5, 6

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5 Things About DIPG That Will Help Us Understand It

Marc Jr Foundation, Marc Junior Foundation

Famous philosopher Voltaire said, “God gave us the gift of life; it is up to us to give ourselves the gift of living well.” It is difficult to have a positive outlook when your child is facing a rare tumor-like DIPG (Diffuse Intrinsic Pontine Glioma) but it is necessary. It is the quality of life that matters the most, no matter how long it is. When facing DIPG, one of the greatest challenges we face is the lack of knowledge about it. These seven things will help us understand it better.

1. DIPG affects children majorly, it is uncommon in adults.

About 300-350 cases of DIPG are diagnosed every year in the United States, out of which most are in children aged below ten. Both boys and girls are equally affected. (source)

2. The disease occurs in a delicate area of the brainstem that controls critical body functions.

DIPG occurs in the “pons” of the brainstem of a person. The pons is a structure located in the upper part of the brainstem that controls functions like breathing, senses like hearing and taste, body balance, communication between different sections of the brain etc.

3. The symptoms of DIPG can appear suddenly.

Typical MRI appearance of diffuse intrinsic pontine glioma (DIPG) | Katherine E. Warren (2012) [CC BY 3.0]
A pontine glioma, DIPG grows rapidly. Some of the early symptoms include sudden hearing problems, nausea, headache, vomiting, problems with movements of the eyes and eyelids, weakness in the face and the limbs, loss of balance, problems in chewing and swallowing food among others.

4. A cure has not been found for DIPG yet.

 

Treatments like radiotherapy help with the symptoms of DIPG by shrinking the tumor but they do not cure it. Despite ongoing research, no definite cure has been found. Research conducted by Dr. Mark Souweidane of St. Baldrick has come close to finding a cure through injecting a high concentration of cancer-fighting drug directly into the tumor. (reference)

5. Awareness, acceptance and comforting can go a long way in helping to deal with DIPG.

As the awareness of this rare tumor is scarce, it is difficult for families facing DIPG to understand and face the disease. Accepting that your child is facing DIPG will help you comfort them and make it a little easier. Simple comforting techniques like giving them their favorite soft toys, cuddling with them under a blanket like Quility, or watching a superhero movie with them will help.

Quility Premium Kids Weighted Blanket & Removable Cover
Quility Premium Kids Weighted Blanket & Removable Cover

The Marc Junior Foundation has been helping families dealing with DIPG by offering educational and financial assistance, along with making efforts to fund research to find a cure. Get in touch with us for more information, donate today to make a difference.

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Diffuse Intrinsic Pontine Glioma (DIPG)

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What is a Diffuse Intrinsic Pontine Glioma (DIPG)?

DIPG stands for Diffuse Intrinsic Pontine Glioma. It is commonly referred to as diffuse pontine glioma, diffusely infiltrative brainstem glioma, and brainstem glioma. The Marc Jr Foundation, and most of the organizations that we collaborate with use the name diffuse intrinsic pontine glioma (DIPG).

In simple words, DIPG is a rare brain tumor that occurs in the Pons, the most delicate area of the human brain. The brain and the spinal cord are connected with a brainstem. The three distinct parts of the brainstem are Mid brain, Pons and Medulla oblongata. DIPG is a cancer of the Pons which serves as the message system between several areas of the brain and controls many critical functions such as breathing and blood pressure.

DIPG - Structures of the brainstem
Structures of the brainstem. Credit: Wikipedia.

DIPG is considered one of the most dreaded forms of childhood cancer mainly because of the location of the brain that it affects and due to the way it infiltrates the normal brain tissue. It affects approximately 500 children each year in the United States with a peak incidence in children around 3 to 9 years of age. It affects girls and boys equally and spans across all social, racial, and religious groups.

There is no known cause of the DIPG and it is a hard pill to swallow. This cancer hasn’t received enough research funding to find a cure and it comes with a zero survival rate that has not improved over the years because of the lack of new research funding. The Marc Jr Foundation is committed to funding this work.

If you would like to join the fight for a cure to defeat DIPG and help families dealing with it, please Donate for a cure today!

Read more about Marc Jr Foundation at marcjr.org and follow our Facebook page.