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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
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

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Can Polio Be The Answer To DIPG Treatment?

DIPG Treatment, Poliovirus

“Science knows no country, because knowledge belongs to humanity, and is the torch which illuminates the world,” said Louis Pasteur whose discoveries has saved the lives of many people.

Today, even though we are moving forward technologically at the speed of light, we still have a very long way to go. Finding a cure and researching better treatments for DIPG is the need of the hour. As many researchers and good-hearted Samaritans are doing their best to find a cure for DIPG, a team of scientists has found a new way to treat it in the study named, “Recombinant Attenuated Poliovirus Immunization Vectors Targeting H3.3 K27M in DIPG.”

A team of researchers at Duke University in North Carolina, led by Dr. David Ashley have developed an immunotherapy treatment that could be used in the future to treat DIPG. The study that began in 2017, targets the H3.3 K27M mutation in DIPG by modifying the poliovirus. This mutation is found in 80% of the DIPG tumors.

If successful, the scientists plan to use this treatment as a vaccine through injection into a muscle to trigger immune responses towards the mutant H3.3 K27M gene. This mutation is also present in other high-grade childhood tumors.

The efforts of these researchers were featured on two segments in CBS’ 60 Seconds. Dr. David Ashley who is the Director of Preston Robert Tisch Brain Tumour Centre was awarded a research grant due to the combined efforts of ChadTough Foundation and Michael Mosier Defeat DIPG Foundation. More than 3 million dollars were required for researching this one method alone. Imagine the amount of money that would be required for multiple research methods and ultimately to find a cure for DIPG. Only through our joint, consistent efforts, we will be able to say goodbye to DIPG and give the gift of life to children.

Join Marc Jr Foundation’s efforts to raising awareness about DIPG and finding a cure for it.

Donate | Volunteer | Sponsor

Sources (1, 2, 3)

Read more:

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

How To Make Your Child Feel Better While Facing DIPG?

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

New Drug For 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.

New Drug For DIPG

 

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.

Donate | Sponsor | Volunteer

Source

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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