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May is Brain Tumor Awareness Month, and we asked a few of our favorite researchers to tell us what they are most excited about in brain tumor research. Today we're bringing you the response from the Filbin Lab at Boston Children's Cancer and Blood Disorders Center. What we’re most excited about in brain cancer research right now By Eshini Panditharatna & Mariella Filbin Dana-Farber/Boston Children’s Cancer and Blood Disorders Center https://filbinlab.dana-farber.org/ Over the past decade, fundamental discoveries have been made in describing genetic-driver events of pediatric high-grade gliomas. The recent surge in this area of research is due in part to increased awareness of the extremely poor prognosis of children with high-grade gliomas, motivating a number of research groups around the world to focus on this imminent issue. Each one of these groups has a unique approach to addressing and tackling these deadly tumors, which is what will bring us closer to a cure. Through these efforts, we have learned that “children are not just little adults” and there is a need for discovering specialized treatments that target the underlying oncogenic events unique to these pediatric tumors. There’s so much more we still need to uncover to gain a comprehensive understanding of pediatric high-grade gliomas. To this end, we are most excited and focused on understanding the developmental contexts of these tumors, and how dysregulation of these developmental processes can lead to pediatric high-grade glioma. We began our journey by conducting single-cell RNA sequencing studies on patients’ tumors and discovered what is considered to be the cell of origin of diffuse intrinsic pontine glioma (DIPG) and high-grade glioma. We found these deadly DIPG tumors are composed of a heterogenous mixture of fast-dividing cancer cells, which resemble precursor-like glial cells but, surprisingly, also of differentiated oligodendrocyte- and astrocyte-like cancer cells. These oligodendrocyte- and astrocyte-like cancer cells do not behave like the other tumor cells any more. They stop dividing and become more “normal”, unable to start new tumors or metastases from scratch. Now, we are interested in identifying the mechanisms that make some of the cancer cells “mature” and behave more normally. If we can, we might be one step closer to our end goal of finding a cure that disrupts these key pathways and prevents the tumor from growing and spreading. We are applying our finding to preclinical studies by looking for drugs that can differentiate glial progenitor tumor cells into mature types of brain cells, which will no longer be cancerous in a child’s brain. Late last year, we found one drug combination for therapeutic differentiation of DIPG cells, and we are on our way to finding more. We will not stop until we find a cure for these uniformly fatal pediatric high-grade gliomas, and we are determined to rapidly translate our findings to the clinic. Our pediatric patients have no time to waste.

DIPG Awareness and the Importance of Collaborative Research

What I am most excited about in brain cancer research… By Nick Vitanza, MD – DIPG Researcher at Seattle Children’s and the Fred Hutchinson Cancer Research Center "Collaboration is what I am most excited about in brain cancer research. I am thankful to be in a rich research environment at Seattle Children’s and the Fred Hutchinson Cancer Research Center, but, while I am excited about our laboratory work understanding the epigenetic regulation of DIPG and our immunotherapy trials of chimeric antigen receptor (CAR) T cells, all of these projects rely on external teamwork. Our upcoming clinical trial evaluating panobinostat and marizomib stems from work I was fortunate to contribute to while in Michelle Monje’s lab at Stanford and the trial is being spearheaded by Kathy Warren at the Dana-Farber Cancer Institute through the ALL-IN DIPG collaborative. Laboratory and clinical studies of the drug ONC201 rely on shared work with Sharon Gardner at NYU, Carl Koschmann at the University of Michigan, Javad Nazarian and Sabine Mueller at University Children’s Hospital Zurich, and other partners in the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and Children’s Brain Tumor Tissue Consortium (CBTTC). Seattle Children’s CAR T cell trials (called BrainChild) already incorporate state-of-the-art sequencing led by Mike Berens at Tgen and our next-generation of CAR T cell trials will be driven through collaboration with other laboratory researchers like Adam Resnick and Jess Foster at the Children’s Hospital of Philadelphia. This is not meant to be a comprehensive list, in fact it’s just the surface of a huge body of DIPG researchers working together, inspiring each other and quickening our communal progress. This work is only possible thanks to the generosity of a funding community that has adapted to support more shared projects and thanks to the patients and families who fight so hard to connect us all. Our progress is thanks to them and the community of researchers who have stepped out of the scientific rat race for individual accomplishments and sacrificed their own prominence to work together to improve the lives of children with brain and spinal cord tumors." Yesterday, May 17 2020, marked the first DIPG Awareness Day. Check out this conversation between Dr. Vitanza, patient Jace Ward, and Rachna Prasad of the Mithil Prasad Foundation: https://www.youtube.com/watch?v=cXM6qRwAOeM&feature=youtu.be

Data interoperability on a global scale

For one of the first times ever, we met with someone who knew about data interoperability on a global scale. Building systems, making them effective and efficient, and using them to change industries are all in a days work for the folks we got to meet with this weekend. We’re truly on the way to something spectacular, and you’re all coming along! Next stop, safe, effective cancer treatments!! Visit the original Facebook post here.

Symposium on Personal Control of Genomic Data for Research

Our President Amanda Haddock, moderated a session at the NCI Symposium on Personal Control is Genomic Data and Research. Day 2 is today and we will get to hear from fellow Kansan Jace Ward about his experiences as a patient trying to get information. We are thankful to the NCI leadership for giving the patient community such a strong presence at this symposium. If you are interested, today will be broadcast and there’s a lot being tweeted using #NCIParticipantShareData19 Check out the Facebook post here.

DMF President Amanda Haddock Interview on KSCW33

DMF President Amanda Haddock was interviewed this morning about the upcoming Head for the Cure-Wichita Event. Facebook post link

The M Family Foundation for supporting the Noah’s G.i.f.t.s. program

Thank you to The M Family Foundation for supporting the Noah’s G.i.f.t.s. program! We’re so excited to be one of your honoree recipients. — with Amber Wilkins. Click here to visit the Facebook post.

DIPG Roundtable Discussion

Our president Amanda haddock with Dr. Sadhana Jackson of the NCI at the DIPG Roundtable Discussion today. https://www.facebook.com/DragonMasterFoundation/photos/a.587870614584281/1909720572399272/?type=3&theater What can members do? Members can follow each other, write and reply to comments and receive blog notifications. Each member gets their own personal profile page that they can customize. Tip: You can make any member of your blog a writer so they can write posts for your blog. Adding multiple writers is a great way to grow your content and keep it fresh and diversified. Here’s how to do it: Head to your Member’s Page Search for the member you want to make a writer Click on the member’s profile Click the 3 dot icon ( ⠇) on the Follow button Select Set as Writer

Biden Cancer Initiative and ISPNO

“The last couple of weeks have been a whirlwind of activity, but that only goes to prove how in demand our efforts are becoming. We have gone from a time when people thought sharing data was crazy, to the current day where those same people are asking for our help to share data. It’s very gratifying, and you have played a major role in helping us get this far. Without the early help of our visionary supporters, we wouldn’t be nearly this far along! We were part of an elite group of foundations who were invited to Washington, D.C. to participate in a meeting hosted by the Biden Cancer Initiative on June 27th. Dr. Jill Biden led off the morning with a very personal greeting, and we spent the day learning about existing programs and how we can augment those for the greater good. You can probably imagine how excited I was when someone in the room brought up Cavatica - and for once, it wasn’t me!! I made several connections with some rare cancer foundations who need a place to put their data, and I was particularly excited to meet Jessica Morris, a GBM survivor who started the Our Brain Bank app. Jessica has done some amazing work giving patients an easy way to share their day-to-day data, and I think that will be something we see incorporated into patient care very soon. Click here to read more!


I was listening to a song today, and I wanted to share it with all of you. This song immediately resonated with me because David was always ready with a hug for anyone who needed it. They feature people in the video who were placed into foster homes, and the imagery for that group is strong. For me, though, this song exemplifies what our brain cancer family is like. None of us want to be here, but now that we are, we are stalwart in our support. You are not going this alone. We are here. We care. You may face rounds of chemo, the pain of side effects or the disease itself, and nearly everyone has a crisis of faith. Doors close without others opening. We can’t stop the bad news from coming, but we can be here by your side to see you through it. Click Here for the rest of the post.


I found a Facebook post today from before I started this blog. You see, I didn’t know the path that we were headed down. I didn’t know that I would be trying to help others navigate the ugly world of brain cancer. I thought my son had a brain tumor that would require some potentially risky surgery, but that we would get it out and be on our merry way. I didn’t know a lot of things – then. Fast forward to today, when I know more than I ever wanted to about brain cancer and how devastating it is – even when it is small and they catch it early. You see, this disease isn’t like most cancers. Catching it early doesn’t dramatically improve your chance of survival. It being small doesn’t make it any less aggressive. Looking back at this post, I am struck by how naive I was. I know that the rest of the world is also that naive. I know that you won’t really understand unless, God forbid, it happens to you or someone you love. And that’s the real kicker. It COULD happen to you or someone you love. We have no idea why David got brain cancer. Most brain cancers can not be traced to a specific cause. He didn’t smoke or drink or even use a cell phone much. He was a healthy, happy 16 year old who didn’t deserve this. No one does. Click Here to Read More...


A long time ago, I wrote a poem for my coworkers. I really had a lot of admiration for them, and they taught me a lot of life lessons. They worked hard, played hard, and made the most of every day. They were paralyzed veterans, and as much as I could, I tried to learn from the lessons they shared. Their strength amazed me, and they made me re-think one of my favorite pastimes – complaining. I think in a lot of ways, I met those men and women to prepare me for what life had in store. It isn’t always easy. It most certainly isn’t fair. But what you choose to do with the pieces you have left after your life explodes… well, that can make all the difference. Today was supposed to be an “office” day for me. A day to tackle the mountains of paperwork I’m behind on. Instead, it turned into a day to go out into the world and see what it had to share. A lot of what I do is try to raise money for cancer research, and today I had the opportunity to get a check from one of our loyal supporters. That’s a really good thing!! But the reason they are supporters is because their daughter, Addison, died from brain cancer. That really sucks. I get to know them a little better each time we meet, and our conversations nearly always include laughter along with the tears. Today the check came with a hug, and I’m not sure if it felt better to be able to hug them as a thank you or to be hugged in return. Hugging is like that, I guess. Click Here to Read More...


This article makes a really good case for big data analytics in medicine. (Which is the heart of what we are working on.) It essentially says that we all have gene mutations making us each much more unique than scientists previously thought. It is really only through compiling vast numbers that we might be able to see some patterns emerge. This applies to cancer research, but it can also apply to all sorts of other medical conditions. Have you ever had a doctor tell you that your response to a drug shouldn’t cause the reaction it caused it caused in you? That’s kind of the same thing. A drug might do different things to you than to other people because of your unique genomic composition. If you’ve ever dealt with a reaction like this, you know how frustrating it can be. Now imagine your reaction is the difference between life and death. Pretty important, right? We are laying the groundwork that will help people navigate these situations. Chances are, it will be you or someone you love that needs the answers. Help us now, so we can help you later. See original post by clicking here.

Dragon Master Foundation works closely with the National Cancer Institute and a network of over 17 hospitals who have agreed to share data to speed cancer research. We have helped develop a large scale database that houses genomic, clinical and environmental data on pediatric brain tumors, and that can be used as a model for research into other types of cancer and rare disease. We support open data projects that share data with the world - not just a select group of hospitals - and that share that data as quickly as possible so we can impact patients of today.

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