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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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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.

Donate | Volunteer | Sponsor

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