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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 Muffie Armstrong, DIPG, Neil Armstrong, Marc Jr Foundation
Remembering Karen Muffie Armstrong | Photo: thetruth65film/Twitter

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

 

Read more:

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

The Symptoms of DIPG You Should Be Aware Of

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How To Make Your Child Feel Better While Facing DIPG?

DIPG, Children, Marc Jr Foundation

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.

DIPG, Children, Marc Jr Foundation
Comforting your child will help them face DIPG.

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.

DIPG, Children, Marc Jr Foundation
You are your child’s strength.

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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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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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

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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.

DIPG, DIPG Prognosis, Brain Tumor, Children, Brain, Health, Marc Jr Foundation
Let’s make the prognosis of DIPG hopeful, not disappointing.

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

Read more:

DIPG Treatment: What Are The Options Available?

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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