DIPG Archives - DIPG | The Marc Jr Foundation

Posted on October 30, 2019

When The World Mourned For 5-Year-Old Braylynn Lawhon

Parker and her daughter Braylynn | Photo: Susan Hull Photography

Four days away from her fifth birthday, Braylynn Lawhon was diagnosed with DIPG. Since then, her mother, Allyn Parker began documenting Braylynn’s journey and her battle with DIPG and shared it on social media to spread awareness.

It is surprising but true that despite the death of hundreds of children every year due to DIPG, the awareness for this glial tumor is scarce. Parker’s efforts, in spite of all the pain she was going through as a mother, made many in the world aware about DIPG.

A photograph that she shared showing Braylynn Lawhon and her crying grandfather next to her had gone viral on the Internet. Her grandfather was diagnosed with bone marrow cancer and ALS – he passed away soon after Braylynn did in January 2018.

Braylynn and her grandfather | Photo: Alynn Parker

Parker wrote in her Facebook post, “We all thought that they would outlive the rest of us…and we certainly never thought that my precious little Braylynn would be the first to go. Last year was hard for us, but I can’t even begin to explain how difficult this year will be and has already been. In a few days I will have to bury this beautiful little girl. Months, maybe even weeks, later, I will have to bury my father.” The photograph made an impact that no amount of words ever can.

The treatment for the little girl cost about $18000 to be spent every 3-7 weeks. The family had started a GoFundMe page where many people came forward to help. And this is a story similar to what hundreds of families go through every year.

In such a state of shock, Parker had planned a princess-themed funeral for her sweetheart. She knew that the child deserved the best. As she passed through the most difficult phase of her life, she remembered to share her daughter’s story in the hope that no other mother has to go through what she did.

The Marc Jr Foundation is committed to finding a cure for DIPG and saving lives. Your smallest act of support, will mean the world to the families battling DIPG. Let’s make a difference together.

Sources: 1, 2, 3

Posted on July 1, 2019

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

Posted on July 1, 2019 July 1, 2019

What Is Convection-Enhanced Delivery (CED)? How Does It Play A Role In The Treatment Of DIPG?

DIPG is an aggressive and a hard to treat tumor that is present in the brain stem. As it has no definite boundaries, treating it is very difficult as there is a risk of damage to the surrounding brain cells. Radiation therapy has often been used as a form of treatment for DIPG as it temporarily shrinks the tumor, thereby reducing the pain. A more advanced form of treatment, known as Convection-Enhanced Delivery (CED) is shown to be more effective.

CED is when chemotherapy drugs are directly delivered to the tumor. It is a technique that has been gaining interest especially for tumors like DIPG that are in a hard to reach location and difficult to treat. CED can pass the blood-brain barrier (BBB) which the drugs that are ingested orally or taken intravenously cannot. The blood-brain barrier is the membrane that controls what drugs can pass from the brain to the brain.

Four catheters are implanted into the brain through surgery and through these catheters the drugs are released into the brain. One of the major benefits of CED is the decrease in the after-effects of radiotherapy such as nausea.

Convection-Enhanced Delivery, Treatment of DIPG — How CED Works | Photo: frontiesin.org

However, compared to radiotherapy, CED is expensive and often requires funding. Also, it is not widely available because of the problems in monitoring drug distribution but several clinical trials are underway for the same. For treatments like CED to gain momentum, more research needs to be carried out and there has to be an increased understanding of DIPG. When backed by sufficient resources, the clinical trials and the research can get impetus and be available as a treatment option for all soon.

Marc Jr Foundation is committed to finding a cure for DIPG. With your support, we can make it happen.

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Sources (1,2)

Posted on July 1, 2019

This New Drug Could Become The First Ever Treatment Designed To Target DIPG

A shocking fact – for about two decades now no new drugs have been licensed to treat brain cancer in adults and children! But this new drug could change things and become the first drug designed to target DIPG.

The scientists at The Institute of Cancer Research (ICR) in London have been working in a new drug that can kill cancer cells. Trials in mice have been successful and clinical trials in children are expected to begin in 2021.

Five years ago in 2014, the team of scientists at ICR discovered that in about 75% of DIPG tumors, the mutation of ACVR1 genes is present. This is what made them focused to research a drug that could target this gene and so, hopefully, be curative for DIPG. Teaming up with the Structural Genomics Consortium in Oxford, they created a new series of molecules to target ACVR1.

Thereafter, they tested 11 prototypes of the new drugs in the cancer cells that were grown in the laboratory and positive results were seen in two of the 11 prototypes. These prototypes not only killed the cancer cells but showed very little effect on the healthy cells in the brain. When tested on mice, it was shown to increase the survival rate by 25%. A new company M4K Pharma has taken this on as their first project to develop affordable drugs for diseases affecting children.

Understanding the biology of DIPG tumors has helped researchers develop new and effective drugs to make life better for those battling DIPG. More awareness about DIPG and its research can make it a thing of the past and give the gift of life to hundreds of children.

Marc Jr Foundation appeals you to join hands with us to bid adieu to DIPG and not to our children.

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Posted on May 31, 2019 July 1, 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