DIPG Archives - DIPG | The Marc Jr Foundation

Posted on May 31, 2019 May 31, 2019

The Story Of Neil Armstrong’s Daughter & Her Battle With DIPG

Karen Muffie Armstrong, DIPG, Neil Armstrong, Marc Jr Foundation

Karen Anne Armstrong was just two and a half years old when she passed away on January 28, 1962. This was also the sixth wedding anniversary of her parents. A beautiful little girl, Karen had DIPG but doctors at the time weren’t able to tell. Fondly called “Muffie,” many say that she was one of the reasons why her father, Neil Armstrong, became the first man to step foot on the Moon in 1969, five years after Muffie’s death.

According to journalist Jay Barbee’s biography, Karen never left her father’s thoughts. When he landed on the Moon and noticed a baby crater, he named it after his daughter and called it “Muffie’s Crater.” Here is what the book says, “He stood there, remembering how Muffie would have loved sliding down into the pit. He had an overwhelming urge to do it for her. But then better judgment grabbed him. He settled for taking pictures and describing what he saw before heading back.”

Soon after her second birthday, Karen was playing the park and she fell. It gave her bump on the head. When she got home her nose was bleeding and she had a concussion. Later in the evening, she couldn’t see properly. Soon she couldn’t walk well. She had DIPG. Radiation therapy took a toll on her health. Her symptoms returned by the end of 1961 and “cobalt treatment,” a treatment that destroyed cancerous cells but also destroyed the healthy ones. She was brought home and soon after Christmas she passed away.

Karen’s battle with DIPG is an inspiration. She never complained, according to her mother Janet. She lived through the last Christmas of life, enjoying it, with utmost joy. Muffie will never be forgotten.

When Muffie was battling DIPG, Armstrong kept detailed notes about her treatment. When she passed away, Armstrong went back to work. It was his way of grieving. He did not grieve in public but like every father who loses a child, mourned when alone. Her memories fuelled him in space.

Neil Armstrong’s famous words, “That’s one small step for man, one giant leap for mankind,” can be interpreted differently today. Your small step to fight against DIPG, can be a giant leap for mankind by finding a cure for it and helping children live. Will you join hands with Marc Jr Foundation in our battle against DIPG? Will you help save the lives of beautiful children like Muffie?

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Sources: 1, 2

What Causes DIPG? Let’s Try To Get Some Answers

The Symptoms of DIPG You Should Be Aware Of

Posted on May 31, 2019 May 31, 2019

How To Make Your Child Feel Better While Facing DIPG?

Facing DIPG is a challenge for not just the child who is diagnosed with it but also the entire family. For parents, seeing their child in pain can be much worse than being in pain themselves. Which is why comforting your child will help not just them but you as well. Here are five ways through which you can make your child feel better when you battle DIPG:

Do their favorite things, don’t mourn but celebrate their life:

It is difficult to accept that your child has a few months left to live. But it is extremely necessary that you accept this. It will help you plan for the coming moments beautifully. If these are going to be the last few months on their lives, you can make them memorable. Do their favorite things, make their life a celebration. It could be something as simple as building clay models or going on a long road trip. The distraction will also help them forget their pain.

Be their strength and be an example:

DIPG majorly affects children under the age of ten. They are very young to understand what is happening to them. If you cry or be weak in front of them, they will imitate you. If you smile and be brave, they will do the same. A child will feel better when you accept the reality, be strong and make the moments of their lives filled with joy.

Cuddle and sleep beside them:

The symptoms of DIPG can make sleeping well difficult. Your child will feel better to see you beside them if they wake up in the middle of the night. Shower them with love. Tell them stories of brave people. Tell them tales of magic and fantasy so they can travel in their imagination. You can also buy them a cape and make them feel like they are superheroes on a mission against DIPG. This will help them a lot.

Get in touch with an organization or a group of people:

One of the greatest pains of facing DIPG in the mind of a child is how they feel they are different than the other kids their age. Along with dealing with the physical challenges of DIPG, they feel left out mentally. Getting in touch with an organization like Marc Junior Foundation will help your child meet others who are also battling DIPG. They will feel like they are not alone. This will soothe them. You can also meet the family of the other children and share your feelings.

Be brave, Marc Jr Foundation is always with you. Your child is special, so are you.

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Posted on May 31, 2019 May 31, 2019

The Future OF DIPG: Research & Hope

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.

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

Posted on April 24, 2019 April 19, 2019

What Causes DIPG? Let’s Try To Get Some Answers

DIPG, DIPG Awareness, Treatment, Cure, Brain Tumor, Pediatric Cancer, Marc Jr Foundation

Diffuse Intrinsic Pontine Glioma (DIPG), is a type of a brain tumor that majorly affects children below the age of ten. This aggressive brain tumor that spreads quickly has no cure. Radiation treatment only temporarily helps alleviate the symptoms. Just like we don’t have answers on how to cure it, we don’t exactly know what causes DIPG. Finding the cause will advance our efforts in finding the cure.

Some cancers are caused due to environmental factors like exposure to radiation or smoking while others are caused because of inherited genes. In the case of DIPG, there is no evidence that supports these two causes.

According to studies, DIPG formation may be linked to the development of the brain. Certain cells in the brain are present in a higher concentration in the development stages. Research suggests that these cells are responsible for causing DIPG. As we mentioned before, DIPG affects children and this could be the answer to why.

Integrated Molecular Meta-Analysis of 1,000 Pediatric High-Grade and Diffuse Intrinsic Pontine Glioma - graphical abstract.jpg — By Alan MacKay et al. (2017) – Integrated Molecular Meta-Analysis of 1,000 Pediatric High-Grade and Diffuse Intrinsic Pontine Glioma (Mackay, Alan et al.Cancer Cell. 2017 Oct 9;32(4):520-537.e5, doi:10.1016/j.ccell.2017.08.017, CC BY 4.0)

Furthermore, scientists who have studied DIPG, have identified the epigenetic and genetic mutation in the pons. When cells, that use DNA to create new cells or to carry out various functions in the body, are unable to do so because the DNA becomes damaged, it is called genetic mutation. These mutated cells are why cancers are caused. Through genetic sequencing, researchers have learned more about the exact genetic mutations that cause DIPG. More studies are underway.

Dr. Eric Raabe, at John Hopkins University, is studying the effect of this genetic mutation on the formation of DIPG. He has found in DIPG, the cancerous cells multiply more than necessary which makes the tumor grow quickly. Through his reach, Dr. Raabe found that the overactive behavior of an enzyme called TET causes the cancer cells to multiply more than necessary. This may be the cause and targetting the enzyme may help in finding a cure.

Join Marc Jr Foundation’s efforts to spread awareness about DIPG and fund research to find a cure for it. So that the next time, when we talk about DIPG, we can talk about DIPG survivors.

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Sources: 1, 2, 3

Posted on April 18, 2019

DIPG Prognosis: What Will The Future Be Like?

DIPG, DIPG Prognosis, Brain Tumor, Children, Brain, Health, Marc Jr Foundation

Mahatma Gandhi rightly said, “The future depends on what you do today.” That is how it is with DIPG. Our efforts TODAY will shape TOMORROW.

Diffuse Intrinsic Pontine Glioma (DIPG) has no cure, so far. When we talk about the prognosis of DIPG there are two views to adopt. One the prognosis of a child diagnosed with it and two, the prognosis of the medical condition generally in the future.

When it comes to the prognosis for an individual, exact prediction of what will happen is not possible. The DIPG patient may survive for few months. About 10% of DIPG patients survive for two years . Radiation therapy may help to prolong the lifespan by few months. Also, the prognosis can change at several stages of your therapy. The average survival time is of 9 months.

Michigan Medicine’s Pediatric Brain Tumor Research Initiative recently conducted a study. The findings of this study pointed out that the extent with which the DIPG tumor penetrates the surrounding tissue in the brain plays a huge role in determining the prognosis.

More studies like these are being conducted by researchers to understand the biology of DIPG and find a cure. The future for this looks bright. Revolutionary application of biotechnology and bioinformatics in the field of medicine can help cure DIPG. Work by people like Dr. Michelle Monje at Stanford University and Dr. Nicholas Vitanza at Seattle Children’s Hospital, along with many other researchers shows that we are close to finding a cure for DIPG. But there is still a long way to go.

A child diagnosed with DIPG sadly faces the same prognosis as a child did four decades ago. Which is why there is a need for more research and funding that can back that research. That is one of the aims we have at Marc Jr Foundation.

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Sources: 1, 2, 3

DIPG Treatment: What Are The Options Available?

Posted on April 18, 2019

DIPG Treatment: What Are The Options Available?

DIPG, Treatment, Brain Tumor, Children, Brain, Health, Marc Jr Foundation, DIPG Treatment

No cure has been found for Diffuse Intrinsic Pontine Glioma (DIPG) yet but efforts are being made to find a cure. However, there are steps that can be taken to ensure that your child goes through less pain. Let’s understand what is the current scenario and why certain conventional treatment options do not work permanently.

Why brain surgery is not possible:

Unlike other tumors, DIPG cannot be removed through surgery. DIPG occurs in the pons of the brain stem. A medical professional cannot conduct surgery in that part without damaging the brain tissue surrounding it, making surgery highly dangerous.
DIPG is not a well-defined tumor. It spreads between brain cells and has no definite boundaries. It also grows rapidly. This is another reason why surgery is not possible.
However, sometimes, when MRI scan results are atypical, a medical professional may need to perform a biopsy and extract a small part of the tumor for diagnosis. Also, surgery may be performed in case of hydrocephalus (build-up of pressure in the brain due to DIPG). Endoscopic third ventriculostomy (ETV) is performed to treat this condition. When this is not possible surgery may be performed to place permanent shunts in the brain.

About DIPG and radiation therapy:

Radiation therapy is only a temporary form of treatment and the only one that can make the DIPG tumor shrink.
Radiation therapy can help provide relief from various symptoms of DIPG like nausea, fatigue, imbalance, loss of muscle movement, blurry vision etc.
After a short span of time, the tumor will begin to grow again. On average, radiation therapy increases the survival time of a DIPG patient by three months.

Experimental chemotherapy and its impact:

Around 250 trials have been conducted in the last three decades where chemotherapy drugs have been used on DIPG patients. However, they haven’t proven useful. Studies are being conducted even today in this field.

Alternative therapy:

Depending upon personal beliefs, alternative therapy options like acupressure, acupuncture, massage, use of herbs etc. can help in managing the pain that arises because of the growth of DIPG tumor or due to the side effects of radiation therapy and experimental therapy.

To know more about DIPG, you can read our other blogs and educational resources. Marc Jr Foundation is always there for you.

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Sources: 1, 2, 3

5 Things About DIPG That Will Help Us Understand It

Posted on March 28, 2019 March 28, 2019

Knowing More About The Diagnosis Of DIPG

Doctors, report, typing, medicine, health

In Marc Jr Foundation’s DIPG awareness series, we have written about what is DIPG and its symptoms. In this article, we are going to understand more about the diagnosis of DIPG. We know that DIPG is a rare glial tumor, a cure for which hasn’t been found yet. As this tumor occurs in the pons of the brain stem, usually a biopsy is not possible.

A patient’s symptoms clinical history along with a Magnetic Image Resonance (MRI) scan can help diagnose DIPG. Through MRI detailed brain scans are created which allows medical professionals to check whether a tumor is present in the pontine segment of the brain.

A Magnetic Resonance Imaging (MRI) Machine

The margins of a DIPG tumor are not well-defined like other tumors. Sometimes a contrast agent is used before an MRI scan but it may not enhance a DIPG tumor. Once the presence of the tumor is ascertained, its position in the pons, its size, the way it presses on the brain tissue etc. are some of the things that help the doctors diagnose DIPG.

In rare cases, when the results of the MRI scan and the symptoms of the child are atypical, surgical biopsy may be performed. This procedure is considered to be very risky by medical professionals. According to The Childhood Brain Tumor Foundation, France used biopsies to diagnose DIPG.

Location of DIPG tumor in the brain | Source: medicpassion.com

Like DIPG, the diagnosis of the tumor is a taxing procedure that can take a toll on the family and the child. We request you to join our movement to raise awareness about DIPG and to generate funding for research to find a cure. It is a shocking reality that only 4% of the United States’ federal funding is dedicated for childhood cancer research, according to St. Baldrick’s Foundation.

You can volunteer, donate, or sponsor our events. Thank you, in advance.

Sources:

https://www.childhoodbraintumor.org/medical-information/diagnostics-and-epidemiology/item/272-dipg-2014

http://weillcornellbrainandspine.org/condition/diffuse-intrinsic-pontine-glioma-dipg/diagnosing-and-treating-dipg

Posted on March 6, 2019 March 22, 2019

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.

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

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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Posted on October 24, 2018 March 22, 2019

Diffuse Intrinsic Pontine Glioma (DIPG)

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!

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