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.
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.
“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.
“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?
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.
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.
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.
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.