Dragon Master

"ARPA Hard"

Thu, 26 Feb 2026 21:23:22 GMT

This is what we've been waiting for...

Science is slow. Technology is fast. What happens when we can combine the best of each field? Can we cure cancers that have currently don’t even have quality treatments? To me, that’s the question that we are trying to answer with the ARPA-H Pediatric Cancer Expansion project.

All pediatric cancers are rare. That’s a relative term, but what it means is that we don’t have enough of any one cancer type to utilize the same resources that more common cancers have. There’s less funding, fewer researchers, and less information overall. Patients with these cancers often have no real standard of care, which means from the moment of diagnosis, they are on a journey of discovery. Mostly bad discoveries, if we are being honest.

In recent years, there’s been a movement among patients and the doctors who care for them to collect more robust data so we can learn more about these diseases. Some historical context here is helpful.

Traditionally, data was difficult to come by for a number or reasons:

1. Storage was expensive, and it was hard to make a case to store data that wasn’t of immediate use.

2. When data was collected, it generally stayed locked within a hospital or a consortium’s boundaries. Even within those boundaries, there may be limited individuals who could actually access the data.

3. Collecting data without a firm scientific reason was frowned upon, so only what was needed for a particular study or care was collected.

4. Pediatric patients, in particular, are not subjected to “extra” interventions, leading to fewer opportunities to collect tissue and other biological samples.

5. Collecting post-mortem samples on pediatric patients was less common than adults because of the additional emotional burdens associated with a dying child.

What has changed?

1. Our knowledge of the human genome (first sequenced in 2003) has rapidly changed how we look at data and how we formulate medical treatments.

2. Patients have become increasingly more involved in care and research, thanks in no small part to social media and open exchange of information.

3. Cloud-based infrastructure has made data more accessible than ever, removing physical barriers to data access, and increasing the pressure on people and institutions to share.

4. There are more observational studies that allow for collection of data for usage across many different scientific purposes.

5. Greater understanding of molecular characteristics have given rise to more biopsies because now there is potentially a direct benefit for patients.

6. Difficult conversations often get their start with nonprofits and patient-to-patient efforts, leading to a more comfortable discussion of tissue donation for physicians with families.

To be clear, even with the positive changes, accelerating the path to cures is still incredibly difficult. Last week, I was in a room with folks who are grappling with these decisions as part of the ARPA-H Pediatric Cancer eXpansion (PCX), and it was some of the most inspiring time I’ve spent doing this work. I’m going to do my best to share some highlights with you so that you will have a greater sense of hope, and also, so you will see how important your support of this kind of work can be.

The meeting kicked off with some very inspirational talks from Stephanie McMahon, a staunch childhood cancer research supporter. It grounded us in the mission, but honestly, the people in this room were already all too aware of what we are up against, and we all have our “why”. We also heard from the ARPA-H Director Dr. Alicia Jackson. I didn’t know this at the time, but something like 80% of ARPA projects fail. Their goals are too big, too audacious. That should give you a framework for how difficult this work is. Insiders call these projects “ARPA hard”.

One of the key challenges for PCX is to gather data from electronic health records (EHRs) at hospitals in near real time and put those data in an environment where they can be used for research. Some notes on that:

• Information in an EHR is not “computable”. Even the most basic reports needed for research can’t be done.

• EHRs are digital, but not all digital data is created equally. Digital might still be a PDF, which is hard to combine with other types of data.

• Patients have tons of data that are not included inside the EHR, so while this is a giant step forward, there are other data that will still need to be aligned to give a complete picture on each patient.

• Even though there are a few major vendors for the EHR systems, each hospital’s environment is a bespoke application. It cannot be assumed that data from one hospital would easily match data from a different hospital.

I believe that this project is well led by Dr. Erika Kim, who seems to not only understand the challenges at hand, but who is eager to overcome them. The teams assembled to address the various components are so talented and driven to succeed, and what I found particularly gratifying was the overall vision that was expressed throughout the room: We are building a pilot to move science and care forward for children with brain tumors, but this infrastructure can and will be expanded to help others with a host of conditions.

I tried to capture the feel of the meeting with live tweets and photos that you can see here: ( https://x.com/amandahaddock/status/2024124093549744433?s=46 )

Since I’m late writing about this, several other people have already made great posts about the sessions, and you can read them at these links:

https://www.linkedin.com/posts/arpa-h_200-hospitals-one-mission-ending-pediatric-ugcPost-7429929411660992512-BY09?utm_source=social_share_send&utm_medium=member_desktop_web&rcm=ACoAAAGrT2wB1G7fUgP8AvNbK18SHNwJHQpB6CA

https://www.linkedin.com/posts/erika-m-kim_pcx-pediatrichealth-interoperability-activity-7431427571977932800-LQZ1?utm_source=social_share_send&utm_medium=member_desktop_web&rcm=ACoAAAGrT2wB1G7fUgP8AvNbK18SHNwJHQpB6CA

https://www.linkedin.com/posts/misha-mehta-phd-bcpa_forneev-allianceforchildhoodcancer-advocacy-activity-7432259785078616064-1nKz?utm_source=share&utm_medium=member_desktop&rcm=ACoAAAGrT2wB1G7fUgP8AvNbK18SHNwJHQpB6CA

Standing Together to Rethink and Cure Malignant Gliomas

Fri, 06 Feb 2026 19:50:54 GMT

Stand Up To Cancer (SU2C) Malignant Glioma Innovation Summit - February 2026

Our President, Amanda Haddock, recently had the opportunity to attend the Stand Up To Cancer (SU2C) Malignant Glioma Innovation Summit—an in-person convening that brought together some of the world’s leading minds in brain cancer research, alongside select patient advocates, nonprofits, and industry partners. The purpose was ambitious and urgent: to define breakthrough pathways for the detection and treatment of malignant gliomas and to accelerate progress for patients who urgently need better options.

From the outset, the summit underscored a truth in this field: no single discipline, institution, or organization can solve malignant gliomas alone . Collaboration, long a cornerstone of both SU2C and Dragon Master Initiative, was a key theme for the summit.

One of the most powerful outcomes of the summit was a collective reframing of how malignant gliomas are understood. Rather than viewing these tumors as isolated clusters of abnormal cells, researchers and clinicians discussed malignant gliomas as dynamic, evolving ecosystems that actively interact with, manipulate, and co-opt the surrounding brain environment.

This perspective shift is supported by a growing body of high-impact research across neuroscience, immunology, epigenetics, and metabolism. By integrating these traditionally siloed fields, the summit focused on addressing the core biological challenges that have made gliomas so resistant to treatment. This ecosystem-based view opens new avenues for therapeutic intervention. These avenues may finally disrupt the cycle of recurrence and resistance that patients face today.

The summit was not an endpoint; it was a launchpad. What made this summit especially meaningful was the shared recognition that incremental progress is not enough . Malignant gliomas demand an approach that is collaborative by design, fearless in scope, and relentlessly patient-focused.

Several presenters noted the intense schedule of the day, which wrung every drop of productivity it could from the time allotted. Leaving the summit, Amanda says she was struck by both the gravity of the challenge and the genuine sense of possibility in the room. When researchers, advocates, nonprofits, funders, and companies come together with a unified purpose, the path toward breakthrough becomes clearer.

This is how progress happens. This is how paradigms shift. And this is how we move closer to a future where malignant gliomas are no longer a devastating diagnosis, but a disease we know how to cure.

CBTN Annual Meeting Kicks Off With Family Story

Fri, 26 Sep 2025 19:03:55 GMT

Powerful reminder of innovation needed

The Children's Brain Tumor Network (CBTN) Annual Investigator's Conference kicked off yesterday with a heartfelt presentation from Misha Mehta, President of the Neev Kolte/BraveRonil Foundation and Senior Director of Research at the Pediatric Brain Tumor Foundation (PBTF).

Misha is a long-time friend and collaborator with Dragon Master Initiative, and her efforts on her son's behalf were Herculean. Most families would not have the knowledge or skills to impact care the way she was able to for Neev, but despite all efforts, brain cancer took Neev anyway. Her story is very familiar to us, but this version shared compelling new insights that resonated deeply. Misha used some of the systems we helped develop to "hack" Neev's care. I hope this will give you a glimpse at what we might be able to do for patients in the future, and we are thankful to Misha for highlighting the need to do more, and at a faster pace, so that these children will have a fighting chance.

Here's a condensed version of what she shared:

In August 2020, my beautiful four-year-old son, Neev, was diagnosed with DIPG. Until that moment, those four letters meant nothing to me. But from the day of his diagnosis, they reshaped my entire life.

Being a researcher myself, I fell into a rabbit hole of DIPG research and quickly assumed two roles: Neev’s primary caregiver and his driving force for what I came to call an n=1 study —with “n” being my Neev.

We began with next-generation sequencing to identify the mutations driving his tumor. That led us to four Phase I clinical trials, and compassionate access to three experimental drugs. Alongside these treatments, I worked to mitigate chemotherapy toxicity—exploring the use of pre- and probiotics to ease his side effects. I monitored his immune system and metabolomics, trying to shape his microbiome and gut-brain axis. I ran pharmacogenomics to personalize dosing of known drugs, and carefully modulated his diet in the hope of influencing tumor growth.

We looked at everything: supplements, acupuncture, even advanced platforms like CAVATICA to mine datasets for insights. I left no stone unturned. I did it all - not just as a mother, but as a researcher, an advocate, a relentless seeker of answers.

Neev’s first trial was at Columbia University, using a convection-enhanced delivery device with MTX110. A pump was surgically placed in his abdomen, connected to a shunt that delivered the drug directly into his brain tumor, bypassing the blood-brain barrier. He endured both brain and abdominal surgeries, recovered bravely, and the infusion began the next morning. Within just five hours, my walking, talking, playful five-year-old lost all body function.

Imagine that—taking your child to the hospital full of life, and within 24 hours, all he could do was blink his eyes. One blink for no, two blinks for yes. And this was during COVID, when only one parent was allowed at his side.

Neev spent two and a half months recovering from treatment-related toxicity. Through sheer determination, he learned to walk, talk, and eat a little again. But ultimately, he returned to where he had been before the trial.

As part of his rehabilitation, he was admitted to UCSF, where he endured daily physical, occupational, speech, and swallow therapy—during Christmas of 2020. One day, barely verbal, he shook his head, looked down, and began to cry. When I asked why, he pointed to a gift from the child life specialist and to the tiny tree his father had brought him. Neev was sad because he thought Santa wouldn’t know where to find him if he is at the hospital. He never got to spend another Christmas at home.

And yet my incredibly brave boy persevered. He relearned to walk three times. He became ambidextrous when one side of his body failed him. He communicated with his eyes, with sign language, with humor and love. His spirit never broke, even as his body did.

But our journey wasn’t just about courage—it was about relentless searching.

Despite everything we tried, it was not enough. Not because Neev lacked love, or determination, or access to every avenue I could find, but because the system failed him. The science was not there. The funding was not there. The treatments were not there.

This is a story of systemic failure. A failure to prioritize rare diseases. A failure to break down silos fast enough. A failure to move discoveries from bench to bedside at the pace that children like Neev desperately need.

On November 30, 2021, we lost our sweet boy. Since then, I have moved through the world with a broken heart. But I am here today—because Neev’s story, and the stories of so many others, demand that we do better.

And that is where collaboration becomes everything. No single lab, no single institution, no single foundation can solve pediatric brain tumors alone. The science is too complex. The diseases too rare. The resources too limited.

Every one of us—families, researchers, clinicians, data scientists, engineers, policymakers, industry leaders, and advocates—holds a piece of the solution. Only when we bring those pieces together can we deliver the progress our children need."

Misha went on to highlight that in her new position at PBTF, she will embed this ethos into everything they do. She is committed to accelerating discovery, breaking down silos, and embedding collaboration into everything PBTF funds.

She announced that PBTF is prioritizing projects that build on and expand openly shared resources generated through CBTN. They will now require applicants to collaborate with CBTN, by both accessing its integrated datasets and biospecimens, and by contributing new data back into the ecosystem. (Editor's note: PBTF will be one of the first major funders to make such a declaration.) It will ensure that a funded project doesn’t just advance one lab’s work, but it will drive collective progress for the entire global community.

She added, "This is not just policy. It’s culture change. It’s the recognition that collaboration is the only way we will deliver cures faster for kids. We’ve seen what happens when we work together: families driving FDA approvals, philanthropy seeding registries, and consortia enrolling hundreds of children in innovative trials.

CBTN is proof of what’s possible when we work together. It is an infrastructure of hope. And hope is what families like mine cling to. But hope must be matched with action. Our kids cannot wait for systems to catch up. They need us to act now.

I carry Neev’s light with me into every room like this. And I know he would be proud that we are no longer accepting the words, ' there’s nothing more we can do.'

On behalf of PBTF, and as a mother who knows the stakes firsthand—thank you for your dedication, your partnership, and your collaboration. Together, we can reimagine what’s possible. And together, we can change the future for every child with a brain tumor."

Dragon Master Initiative is closely aligned with CBTN, and we believe their mission is the way forward for not just children with brain tumors, but children with a multitude of conditons. We are thrilled that PBTF is making this commitment to the shared resources of CBTN. It is exactly this type of action that will drive the change these children require.

Jeff Stevens of Seattle Children’s Hospital Honored with Inaugural Sunny Award at CBTN Summit

Mon, 14 Oct 2024 13:26:00 GMT

At the Children’s Brain Tumor Network (CBTN) Summit, held in Arlington, VA, from October 9-11, 2024, Jeff Stevens from Seattle Children’s Hospital was awarded the inaugural Sunny Award . This new honor, sponsored by Dragon Master Initiative, recognizes individuals who exemplify the spirit of CBTN through their dedication to innovation, collaboration, and patient-centered care.

Jeff Stevens, known for his empathy and commitment to improving processes across institutions, was celebrated for his remarkable efforts in pediatric cancer care. In his work, he has consistently gone above and beyond, not only as a professional but as a deeply compassionate advocate for patients and families. His colleagues hold him in the highest regard, and his interactions with the families he serves reveal the full extent of his dedication.

One story shared during the award presentation highlighted Stevens’ incredible empathy. After the passing of a young patient, Emily, her mother remembered how much Emily had looked forward to keeping her port. In a moment of grief, Emily’s mother reached out, wondering if it could still be saved. Jeff made sure the port was retrieved and went out of his way to honor Emily’s memory. Knowing her love for Crocs, he purchased a pair, used a special butterfly container from Child Life Services for the port, added her final courage bead, and delivered it to the family in a Crocs bag — offering them comfort during an immensely difficult time.

The Sunny Award was created in memory of Jean Slotter-Matsuk, an ardent supporter of CBTN and mother of Jena Lilly. Despite battling cancer herself, Jean remained devoted to advancing research for children with brain tumors. Fondly nicknamed “Sunny,” her spirit of generosity and tireless advocacy inspired this award, which will continue to shine a light on individuals who prioritize patient care and foster collaboration.

Amanda Haddock, president of Dragon Master Initiative, shared during the ceremony, “The Sunny Award honors those who embrace innovation, build collaborations outside their institution, and put patients first—traits that Jeff Stevens fully embodies. His compassion for families, like Emily’s, shows the heart behind his work, and I know Jean would be proud of him carrying forward her legacy.”

Dragon Master Initiative and CBTN plan to present the Sunny Award annually, recognizing those who, like Jeff, go above and beyond to ensure that every child and family they serve feels supported and cared for in their most vulnerable moments.

Dragon Master Partners with the Nancy Valenkamph Cancer Foundation

Wed, 09 Oct 2024 17:54:00 GMT

The Dragon Master Initiative (DMI) would like to again extend a warm thank you to the Nancy Valenkamph Cancer Foundation (NVCF) for giving DMI an opportunity to raise funds on Hole 15 at the beautiful Sandy Pines Golf Course in Demotte, IN at their Spring and Fall Outings.

The Foundation has allowed us to partner with them for several years and it is a fun, well attended and highly effective fundraising event.

Golfers had the option to donate and better their position on the longest hole at the Sandy Pines Golf Course.

DMI Board Member Mike Guevara, who lives near Demotte, IN, helped coordinate the effort with NVCF volunteers for an afternoon of great weather, awesome fundraising and on occasion some really bad golf!

Golfers who donated were asked to pose with a Team Fired Up race medal to help promote awareness! We are definitely looking forward to next years golf outing.

Info for the NVCF Golf Outing, please click here: https://nancyvalenkamphcancerfoundation.com/

Congratulations to the Winners of the 5th Annual Dragon Derby 2024!

Mon, 23 Sep 2024 19:02:00 GMT

We’re thrilled to share the results and winners from the 5th Annual Dragon Derby 2024!

One special category of entries allows participants to donate their entry to a child with cancer, known as the “Karma Kids” for this event. This category consistently receives a heartwarming response, and every year, a child with cancer has won something. However, this year stands out with an unprecedented number of Karma Kid winners! In addition to funding research and supporting families’ travel, four families will receive extra help to use in whatever way they need most.

We really appreciate all of you for making this happen, especially our presenting sponsor Slape & Howard!

Here’s the list of winners for 2024:

1st Place – $1,000 – Isabella M. (Karma Kid!)
2nd Place – $555 – Mary S.
3rd Place – $300 in Wholesale Fireworks courtesy of KWCH – Todd V.
4th Place – $200 to 6S Steakhouse -Diana C.
5th Place – $250 – Brendan J. (Karma Kid!)
6th Place – $200 – Lila G. (Karma Kid!)
7th Place – $100 to 6S Steakhouse – Adele W. (Karma Kid!)
8th Place – $100 to HomeGrown – John H.
9th Place – $100 to Stutzman’s Greenhouse – Sheila B.
10th Place – 1 Hour Massage from MYO Massage – Scott M.
Last Place – Slow Down Arrive Alive prize courtesy of Davis-Moore Auto Group – Vanessa T.

Finally, the prize for most creative name for a dragon goes to Sara O. for Sir Fierce Brosnan of the Secret Lair!

A heartfelt thanks to everyone for your dedication to this cause. Together, there’s real hope that we’re moving closer to a future where childhood cancers are no longer a threat.

Reminder: September is Childhood Cancer Awareness Month

While the spotlight is here, it’s important to remember that September is Childhood Cancer Awareness Month. Childhood cancer is the leading cause of disease-related deaths in children, with brain cancer now being the top cause of childhood cancer deaths. In the past, leukemia held this grim title, but thanks to research, treatments for leukemia have improved. Now, it’s time to shift focus and make the same progress for kids with brain cancer. Promising therapies are on the horizon, but both funding and awareness remain crucial.

By supporting the Dragon Derby, you’ve already contributed to this effort. To keep the momentum going, consider making a social media post in September using the hashtag #InflateAwareness and tagging @BeADragonMaster. Share a fun photo of something “inflated”—whether it’s balloons, beach balls, or those tall wavy figures that catch attention—and use it to spread the word.

Team Fired Up: August Spotlights

Mon, 29 Jul 2024 13:37:00 GMT

Meet Honoree Sophia and Runner Nick

Introducing Sophia, a remarkable example of strength and courage. Despite being only 14 years old, she has faced more challenges than most adults do in a lifetime. When she was just 4 years old, Sophia was diagnosed with Wilms Tumor. Her relentless positivity, boundless creativity, and sense of humor have lifted the spirits of those around her and served as a source of hope for her parents and the entire community.

At a young age, Sophia faced surgeries, chemotherapy, and radiation therapy. Still, she often reminded people, “I am one tough cookie.” The chemotherapy treatment that Sophia received was developed 30 years before her treatment. This indicates that there had been no advancements in Wilms Tumor therapy for over 30 years! Despite her young age, Sophia constantly desired a better experience for childhood cancer patients diagnosed after her. She prayed for a chemotherapy treatment that would cure cancer without causing stomach pain or hair loss. Sophia’s journey deeply inspired her parents, who found their strength in her unwavering faith and resilience. She is a true hero, showcasing bravery and a spirit that knows no bounds.

While at 4 years old and undergoing cancer treatments, Sophia adored Disney princesses, and her dream of a magical trip to Disney World came true: Sophia met her favorite princess, Merida, the bravest of them all! As the years passed and she prevailed over cancer, her passions and interests expanded. Sophia is now a gifted musician, artist, and committed member of her school’s tech crew. Her future aspiration? Attending college and becoming an architect, a testament to her unwavering optimism and motivation.

With a hopeful spirit and a drive to make a difference, Sophia advocates for improved treatments for childhood cancers through Dragon Master Initiative’s research funding. She is one tough cookie , and her unwavering positivity brings joy and hope. Keep shining bright, Sophia!

Runner Spotlight

Nick is a dedicated and passionate runner who has found a deep sense of purpose that connects his love forrunning to his professional career. Participating in his second Dopey Challenge alongside Team Fired Up, Nick holds a special spot in his heart for the Walt Disney World Marathon Weekend. His running journey began during the onset of the COVID-19 pandemic as a means to remain active. Since then, he has embraced the activity wholeheartedly.

Nick’s dedication to running is not just about personal achievement but also about making a difference. His background in biotechnology has given him a unique perspective on the importance of bridging information gaps for disease cures. This understanding led him to Dragon Master Initiative. The initiative’s mission to fund research and development for pediatric brain cancer through data collaboration struck a chord with him, reminding him of the importance of every step he takes. He felt compelled to take action upon learning how Amanda Haddock founded the charity as a response to the devastating loss of her son, David. Nick is raising awareness and funds by making a tangible difference in those affected by this horrible disease.

Whether pounding the pavement or confronting challenges in the dynamic biotechnology industry, Nick’s determination to bring about positive change is a powerful source of inspiration.

Nick’s Fundraising Tip

Nick’s collaboration with local businesses has led to successful campaigns. One recent campaign involved selling eclipse glasses before the total solar eclipse in April, raising nearly $1,000. Nick’s commitment to fundraising and creative partnerships continues to drive success in supporting Dragon Master Initiative.

Interested in being in a future honoree or runner spotlight? Email info@dragonmaster.org for more information.