Kids Helping Kids – Four Pennies at a Time

Dragon Master Foundation

Y O U R S P O T F O R L U X U R YIf you follow me on social media, then you have probably seen some mention of the Four Pennies project. There is a unique opportunity with the Four Pennies project to involve the population that stands to benefit the most: children. The money and awareness being raised through Four Pennies will help children with pediatric brain cancer, and by extension children with other types of cancer due to the expansion of collaboration among cancer researchers, but this project does more than that. It also provides young people with a unique, immersive opportunity to learn how they can help make a difference in their world, and among their peers.

Often children feel powerless to impact change on the world around them, and with all the negative news they are faced with, it can be overwhelming. The story of Four Pennies and Eric Montgomery is a powerful image of a young man who chose to make a positive change in the world and is inviting the rest of us to follow along.

You may be wondering why the project is called four pennies. There is more detail about that on the website (link at the bottom of the page), but here’s the way I put it when I’m talking to kids:

Eric decided to ask people to donate for pennies for every step he takes along this long trail. He picked four pennies because that’s the amount of every government cancer research dollar that goes to kids’ cancer research. So for every dollar that the government spends on cancer research only four cents goes to pediatric cancers. ( I usually pause here to see if they think that is fair. Spoiler alert: they don’t.)

Now four cents a step may not seem like very much, but the trail goes all the way from Mexico into Canada, so it’s a lot of steps. We are trying to help Eric reach his goal of getting four cents donated for every step that he takes by going out and telling people in our community about this amazing thing that he’s doing.

Eric began hiking the Pacific Crest Trail on Sunday, March 18th, but don’t worry! You haven’t missed much yet! The Trail goes from Mexico to Canada, so it will take quite a while for him to complete it – about 4 months, in fact! Eric estimates that it will take him about 4.6 MILLION steps to traverse the trail in its entirety. All along the way he will be giving us updates via social media, so it is a great chance for kids to see some educational principles in action.

Here are a few learning opportunities for classrooms who are following along:

• Geography/Geology – Eric will go through 6 of 7 eco-regions in the US. It’s a great opportunity for some real-world map reading and projections of how long it will take him to travel certain distances. Sample questions to ask: What kinds of things might slow Eric down on the trail? What kinds of terrain will he go through? Will he encounter the same type of terrain more than once?

• Goal Setting – Trips like this require a lot of planning and personal motivation. Eric has been planning his trip for months, taking into account that he won’t have access to  resources (food, water, shelter) along many parts of the trail. He will also need to motivate himself while on the trail for that many days by himself. Sample questions to ask: What kinds of things do you think Eric would need to pack for his trip? How much weight would those things weigh? Can he carry everything he would need for the entire trek?

• Preservation/History/Government – In order for trails like this to exist, they had to be commissioned and protected. The Pacific Crest Trail passes by National Monuments, through State & National parks, national forests and federal wilderness areas. It was one of the first two national trails, and was designated as such by President Johnson. Sample questions to ask: Why would the government need to be involved in protecting the trail? What circumstances make it ok to allocate space for public use? What could the positive effects of this be? Could there be negative effects?

• Math – So many possibilities for math! Students can calculating steps for a given distance, estimate how many steps Eric will take in a day, calculate the potential amounts of money raised based on various distances, etc.

• Biology – Six different ecosystems means the potential to encounter a number of native plants and a variety of species along the path. Students could research the most probably plants and animals that Eric may encounter. They could also talk about the ways the animals and plants differ based on the environments they live in. Sample question to ask: How would you expect the plants and animals to differ between ecosystems? Why would they be different?

• Engineering – land management, maintenance and restoration, construction, motorized vs nonmotorized trails. Sample question to ask: How can modern engineering protect nature?

• Language arts – reporting on Eric’s journey, imagining what could happen along the way, and reading about others who have taken the journey are all ways to engage more with Eric’s path along the trail.

If you are interested in learning more about the project, you can check out fourpennies.org or just send me a message! I can pass questions along to Eric out on the trail, and I’m happy to set up a Skype session with your classroom to help them learn more. If you want to make a donation, you can do that here.

 

The Force Is Stronger Now

Dragon Master Foundation, Uncategorized

NoahsLightGoldRibbon

Sometimes on this cancer mom path, you meet people who are on a similar journey. When I first met Amber Larkin, and saw the work she was doing, I knew that I wanted to be a part of that effort. My daughter and I volunteered with Noah’s Light Foundation, even after we had started Dragon Master Foundation. Our missions were so similar, and our boys had so much in common, that working with them just felt right.

Recently Amber came to me and told me that she has a different path in mind for Noah’s Light, and she asked if Dragon Master Foundation would be willing to take on some of the work she had started with their foundation. What a very special request that was! To say I was honored would be an understatement. I have a lot of respect for what Noah’s Light has accomplished, and like the Jedis that Noah and David loved, they are passing their knowledge and wisdom on to us.

Amber tells the story best so I’ll let you read all about it here:

http://www.noahslight.com/the-new-light-a-note-from-amber/

Thank you for being part of our journey so far, and we are excited about all the new things in store for 2018.

How is Cancer Research Like Playing “Go Fish”?

Dragon Master Foundation

Sorry for the lack of blog posts lately. Lots going on, most of which gets posted to some form of social media or the other, but I wanted to make sure you non-social media folks saw this! We partnered with a class at the University of Alabama to make a video to help explain what Dragon Master Foundation does. We think they did a great job… let me know what you think!

Recognition for “Putting Kids First”

Dragon Master Foundation, Uncategorized

Gabriella Miller Kids First Pediatric Kids First Research Program

We are so proud to share the announcement that the Center for Data Driven Discovery in Biomedicine (D3b) has been selected to lead the NIH’s Kids First Data Resource Center. D3b is based at Children’s Hospital of Philadelphia, and they along with a number of other partners, including Dragon Master Foundation, will be a integral part of the new, collaborative effort funded by the National Institutes of Health Common Fund to discover the causes of pediatric cancer and structural birth defects through the use of big data.  The Center will be known as the “Kids First Pediatric Data Resource Center” (DRC).

This effort goes hand-in-hand with the work we have been doing on Cavatica, and as a liaison to the Children’s Brain Tumor Tissue Consortium’s Scientific Advisory Committee, I will be attending meetings for the next three days related to this and other collaborative efforts to take place in the coming year. We are so excited about the influx of resources from NIH, but  it does not take any of the pressure off of the work we are already funding. This means that the project will grow bigger and faster, but there is much work to be done on our own efforts. For example, the clinical trial that we have committed to fund still needs to be funded.

We want to take this opportunity to recognize all of the hospitals, foundations, individual doctors and researchers, and families who have worked together to get us this far. This really is a massive undertaking that we believe will forever change the way we conduct medical research. Please take a moment to read the full press release here.

 

Survivor Offers Words of Hope to Senator McCain

Dragon Master Foundation

electioncancergraphic

This post is a guest post by Alexander Moore. Graphic created by Laurel Jackson.

It saddened me deeply  to hear that American hero John McCain was diagnosed with Glioblastoma or GBM, the most common and most malignant of brain tumors. It is simply not fair for someone who has already suffered the unimaginable horrors of war and captivity to now have to endure the pain of Brain Cancer. Senator McCain will be 1 of nearly 24,000 people diagnosed with primary brain cancer this year in the U.S. Not a lot in the grand scheme, but for almost 24,000 people and their families, it’s devastating. The median survival is 16 months and the effects of the disease and treatment deeply impact quality of life.

Senator McCain has already had surgery to have as much of the tumor removed as possible, but he will most likely go through a treatment regimen which combines radiation and an oral form of chemotherapy. For most who suffer from GBM, treatment only really prolongs life because the tumor is almost guaranteed to grow back even after chemotherapy and radiation. Through the next few weeks, the McCain family will learn all about Brain Cancer and the devastating effects it has on those who have to endure it, just like another political powerhouse family, the Bidens did a couple years ago.

Former Vice President Biden lost his son Beau to Brain Cancer in 2015, and since then has made it his mission to radically change the way that cancer research and treatments are done with the Cancer Moonshot initiative. The Cancer Moonshot initiative has been a point we can all rally around, and hopefully, these additional efforts will speed new treatments for patients everywhere. 

There are big changes happening in cancer research, and there is every reason to hope that discoveries will be made faster than ever before. Initiatives like Cavatica.org, funded in part by Dragon Master Foundation, make cancer research data open to researchers around the world. Additionally, researchers are willing to push their work into new frontiers, like the Children’s Brain Tumor Tissue Consortium (CBTTC) and Pacific Pediatric Neuro Oncology Consortium (PNOC) hospitals who have agreed to share data live during a clinical trial that is set to start later this summer. We are working closely with these initiatives, both through idea sharing and funding. Patient, family and foundation input is being heard more than ever before, and I am optimistic that Senator McCain will be a strong advocate for both himself and other patients facing a similar diagnosis.

I’m confident that Mr. McCain has the fortitude to take this disease on full steam, and everyone at Dragon Master Foundation wishes him well.   

Editor’s note: The odds of getting brain cancer is about 1 in 140 for men and 1 in 180 for women. The odds of being elected to Congress are 1 in 600,000. Let’s all hope Senator McCain continues to beat the odds!

How weird are you?

Dragon Master Foundation

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.

Signs, Llamas, and Hallelujahs

David's Journey, Dragon Master Foundation

dancingllama.jpg

A lot of people I know believe that their loved one can send signs from Heaven. I’ve always been a bit of a skeptic about this, but I can’t deny that things happen in quirky and unexpected ways that certainly bring David front and center for me.

Today, I was listening to Ben Rector’s Brand New. It’s a song I really connect with – usually in a very happy way. Today, though, it happened to play as I was doing some work on kids with brain cancer. I listened to the lyrics in a different way because of that. Normally, I think of my husband when I hear it, but today, I thought of David. He had this crazy dance thing he would do in middle school called the Llama dance. It was silly and pointless and that was the whole point. It was just to make people laugh. The lyrics for the song say this,

Like when I close my eyes and don’t even care if anyone sees me dancing

Like I can fly, and don’t even think of touching the ground

Like a heartbeat skip, like an open page

Like a one way trip on an aeroplane

It’s the way that I feel when I’m with you, brand new”

I miss the fresh and happy way that David looked at things. He saw the good. He saw the possibilities. A lot of what we are trying to do is because David believed that REALLY good things were possible. The work we are doing is not easy. It is hard. It is expensive. Half of my days are spent alternating between people who have trouble connecting with the cause because they haven’t lost a loved one to a “rare” disease, and the other half is dealing with people whose lives have been shattered by it. The real message isn’t about rare disease, though. It’s about the human condition, and how we can improve life for everyone if we do this one hard thing.

“Brand New” normally makes me very happy, but today, it just made me sad. It made me miss the way I got to feel when I was with David. I can tell you that it feels a little strange to be crying buckets while such an upbeat song plays, but there I was. The song ended, and the next song to play was

Andy Grammer’s “Good To Be Alive”.

If you aren’t familiar, some of the key lyrics for this song are

I’ve been grinding so long, been trying this shit for years

And I got nothing to show, just climbing this rope right here

And if there’s a man upstairs, he kept bringing me rain

But I’ve been sending up prayers and something’s changed

I think I finally found my hallelujah

I’ve been waiting for this moment all my life

Now all my dreams are coming true, ya

I’ve been waiting for this moment

And it’s good to be alive right about now

Good, good, good, good to be alive right about now”

If you don’t really listen, it just sounds like a typical happy song, but when you listen to the lyrics, you understand that the joy he feels is because he has spent years trying to get to this point. The struggle to achieve your dreams makes attaining the dream euphoric. On paper, we have a lot to be proud of, but in reality, we’re still climbing that rope. We’re putting hand over hand, making progress. The doors are opening, but it will take a lot more money to really get us where we need to go.

I think this song came on to remind me that we will have our “hallelujah” moment. We will see the day when we can truly deliver people from the grips of brain cancer. I believe that the course we are on will also help find cures for lots of other diseases and medical conditions. But we really do need your help. We have all been given the gift of life TODAY. And what we do with that gift can make our collective world a better place. Will you join us?

We need to people who will help us raise money in the Macy’s Charity Challenge. It doesn’t start until July 11th, but you can sign up now. You may not think it will make a big difference, but it does. Because if you take a step forward, other people will step forward, too. It doesn’t matter if you aren’t online much or if you hate fundraising. In fact, it means so much more if those things are true. By signing up, you are saying you believe in David’s vision. You’re saying you believe we can create a better world. It only takes a few minutes to sign up, and you could help us have that “Hallelujah” moment.

Sign up here: https://www.crowdrise.com/fundraise-and-volunteer/the-team/dragon-master-foundation

(If you see an image that says “test team”, don’t worry – it should still take you to the Fired Up For A Cure/Dragon Master Foundation Page.

Who’s Really the Enemy Here?

David's Journey, Dragon Master Foundation, Uncategorized

hawking

When someone you love is diagnosed with a terminal illness, the gut reaction is to attack that disease. That’s certainly how we felt when David was diagnosed, and our initial efforts were focused on ending Glioblastoma (GBM) because that was the type of tumor David had. We were not involved in the world of research, and that seemed the most logical  course of action to us. To strike back at the thing that struck at us.

We thought we knew how to help. As we learned more, we realized that we needed to help find cures for brain cancer as a group of cancers because there is a lot that can be learned by studying them together. We also felt like we needed to help that community as a whole because they are so underserved. A broader goal brought us into contact with many more researchers, and many more ideas.

We were energized by some of the sharpest minds in research, and realized that the kind of analytics we wanted to do are really best empowered by studying all types of cancer, and even other diseases, in tandem. The most cutting-edge research points to cancer being mutations in genes and studying the mutations, regardless of the starting point in the body, is leading to new research pathways.
Cancer is a disease that has plagued humanity for generations. In all that time, we have mostly dealt with it as a disease of a particular body part. We now know that it is much more complicated than that, and we need to empower researchers to follow many pathways.
David had a bright and curious mind. For him, helping researchers was never really about helping himself. It was always about helping other people and solving the puzzle of cancer. Brain cancer is the beast that took David from us, and we would love to see that disease wiped out for good. But what if the answer to curing brain cancer lies in pancreatic cancer research? What if the answers we seek lie in the cure for  fibrodysplasia ossificans progressive? (That’s a super interesting rare disease that has been connected to the brain cancer DIPG. You can learn more about that here.)
It’s human nature to strike back at the thing that hits you. But do we really even know what that thing is? Dragon Master Foundation is focused on putting all of a patient’s information into one giant research platform. It’s a database, yes, but it is also a place where researchers can collaborate and gain access to biosamples. It has a patient’s full genomic data, but it also has their treatment path over time. It gives us a more complete picture of what is going on with the patient and what treatments are successful. It can help us understand why certain patients do well on a clinical trial and some don’t. And possibly most important, it looks at patients across many disease types to compare and contrast things like gene mutations. Instead of having one small group of researchers working on a problem, this platform makes it possible for any researcher, anywhere on the planet, to work on high quality data to help find cures.
Tomorrow is #GivingTuesday. It’s a time when people around the world put a few of their hard-earned dollars into the hands of a charity that they hope can change the world. I’m convinced that Dragon Master Foundation is one of the most deserving places you could make your donation. Here are a few of the reasons why:
  • No one at Dragon Master Foundation gets paid.
  • We direct all of our research dollars directly into this one project that is already speeding research. (One doctor said that it shaved a month and a half off of his typical tissue request workflow!)
  • This project has the potential to help patients with cancer as well as a host of other medical conditions.
  • Through this portal, research can be done on both adult and pediatric populations.
  • It was listed as part of Vice President Biden’s Cancer Moonshot Fact Sheet.
  • It is open access – meaning researchers don’t have to be part of a special consortium to access the data.
  • It is cloud based – meaning the researchers don’t have to download petabytes of data that can take days to acquire. It also means they are not dependent on their hospital’s computational power because they can do their work directly in the web.
Dragon Master Foundation isn’t the only foundation funding this. As of right now, there are 13 hospitals and more than twice as many foundations putting resources toward this project. However, many of them have a specific disease focus where they direct their resources. By donating through Dragon Master Foundation, you can be assured that your donation will go to building the infrastructure that will help all patients, all researchers. This isn’t just a gift to help researchers. This is a gift for mankind. This #GivingTuesday, you can  be part of the generation that changes the world.

The Top 9 Things You Need to Know When Your Child is Diagnosed With Cancer

David's Journey, Dragon Master Foundation, Uncategorized

carpeWhen David was diagnosed at 16, he was the first person in my immediate family to have a cancer diagnosis. We were shell shocked, to say the least. To be told that your seemingly healthy teen who had a bad headache is going to die… well, nothing prepares you for that. What happens next, though, is something I very much hope we can help parents prepare for.

David went to heaven four years ago, but we have stayed very active in the brain tumor community. It has been a huge part of my life for the last six years. (He was diagnosed in 2010.) I’ve learned a lot since then, some of it while David was in treatment, and some of it after he passed. All of it is information that I would rather forget, but it is important for parents like me to share their journeys so that those who follow after us can have a smoother path.

So here it goes, my top 9 tips for parents who’ve just heard that their child has cancer:

1. GET A SECOND OPINION. (Sorry for the all caps there, but really, this is important.) I don’t care that your doctor has been your family’s doctor for the last 3 decades. I don’t care if you are at one of the top hospitals in the country. Get a second opinion. Doctors are humans, and a lot of what happens in cancer treatments is up to their judgement. You may find that you don’t want to be on the path that they recommend. That isn’t a criticism of them. People are different. Paths are different. You almost always have to talk to more than one institution to know what all of your options are.

2. Do your research. Over and over again, I talk to families who say, “Well, our doctor said it is a ___ and we should do ___.” Then they just do it. We’ve been trained to honor medical professionals and trust their judgement. That’s not a bad thing. But being led around like a blind sheep can lead you into a treatment path that isn’t right for you or your child. When you are given the diagnosis, look it up. Start with major websites that can give you reliable information. A really good place to start is at https://www.cancer.gov/types

From there, look for foundations that specialize in the type of cancer that your child has. Since David had brain cancer, I can tell you that the sites I found useful were:

http://abc2.org/guidance/find-care – to find out which hospitals specialize in brain cancer – more on this later.

https://endbraincancer.org/we-can-help/ – to get guidance on what your next step should be. At the time I sought their advice, they were very frank about the type of testing they recommended and what to look for in a doctor, including referring me to a Neuro Oncologist.

3. If at all possible, go to a hospital that has a brain tumor team. ABC2.org only lists hospitals with a dedicated brain tumor team. The world of brain cancer research was virtually stagnant for many years, but in the recent couple of years, discoveries are being made very rapidly.  I don’t think it is practical to expect a doctor that deals with many types of cancer  to stay on top of every new treatment coming down the pike. Most will wait for the “tried and true” treatments before they change their recommendations. Brain cancer patients frequently don’t have that kind of time. Cutting edge treatments could mean the difference between life (or at least extended life) and death.

4. Ask every question you have. Write them down between appointments and don’t be shy about going through your list. The medical staff is there to help you and your child and the first step of that is making sure you understand what is going on.

5. Don’t be afraid to “fire” your doctor. I know that isn’t going to make me very popular with some folks, but here’s the deal. This is the single most stressful thing you will ever go through. You need to know that the doctor is 100% on your side and will fight for your child. If they ever make you feel like you are wasting their time, or your child doesn’t deserve treatment, move on.

6. Seek help. If you have found a doctor you like, but they are far away, ask for help. There are many foundations that fund travel and related expenses. Hospitals themselves sometimes have funds or auxiliary groups who can assist you. Crowdfunding websites help people raise money all the time for just this reason. You aren’t a slacker if you need help paying for all of this. Treatment is expensive. Time away from work means you have less money than normal. Going to doctor’s appointments means you need extra daycare, pet care, home care. It adds up. You can find a list of resources for brain cancer patients at http://www.dragonmasterfoundation.org. (Full disclosure: I’m President of that foundation.)

7. Make a Plan B. For everything. You may have a reliable vehicle, but what happens if your transmission blows? You have a friend picking up your other kids from school, but what happens when they get the flu? Most likely, you have people offering to help you, but they don’t really know what to help with. Get them involved in your plan B.

8. Make a treatment Plan B. I could have included this above, but this is super important. If your child has an aggressive cancer or one that has a high probability of recurrence, ask your doctor to tell you what the next line of treatment is. Time after time, people are lulled into a sense of security because treatment is going well, and the BAM! The cancer comes back. Everyone wants to believe the treatment will work, and if it fails, you have that same shock that came with diagnosis. Knowing what the next possible treatment is can really help you feel more prepared.

Side note: We were blindsided when David’s cancer spread. He had been on a clinical trial and was doing so well that his results were presented at a conference. We just knew he was going to beat his cancer. When it spread, we were kicked off the clinical trial and had to scramble to figure out what options were available for him.

9. Trust yourself. All of the tips above are for families who are prepared for an aggressive battle. However, not every family chooses that path. We were fortunate because David was a teenager and could tell us his wishes for treatment. Most parents are dealing with younger kids who may or may not understand the repercussions of treatment. We had an amazing neuro oncologist who would always lay out possible treatment options to us and the last choice was always, “or you can do nothing.” David had glioblastoma multiforme, and even now, six years later, there are no easy answers for that type of cancer. Brain cancer is a tricky, nasty beast. If there were one thing that was certain to work, I would recommend it, even if it made the child feel bad for a while. After all, what is six months of feeling bad compared to the potential 77 years of life lost when a child dies from cancer? But with brain cancer, there are no guarantees. Heck, for the aggressive cancers, there is very little hope. The families that push forward with treatment do so because it feels right for them, and frequently, because they want to help other people.

David was pretty adamant about helping others. His tissue was donated to research, and it is now part of an open access database that is empowering research around the globe. (This is also a project funded in part by Dragon Master Foundation. For more info on that, go to Cavatica.org.) It was a heart-breaking journey, but it was not in vain. I know that David would be thrilled to know that researchers are sharing data and working around the clock. We don’t know the answers yet, but I have every confidence that they are on the horizon.

I used to preface my help to people by saying “I’m JUST a mom…” because in the world of cancer research, I don’t want to come across as a doctor or researcher. However, my hard earned “momcology” degree is valuable, and I’m moving forward with a sense of purpose that my message is important and needs to be heard. Do you have tips you’d like to share for newly diagnosed patients? Please share them in the comments!

One Small Gesture CAN Change the World

Dragon Master Foundation, Uncategorized

Today is the halfway point in the Revlon Love is On Challenge. We have raised over $21,000, which far exceeds any online fundraising we have done for Dragon Master Foundation in the past. It shows that we are growing as a foundation and that people are starting to really understand and support our mission. I really wanted us to be at $50,000 by the end of the day today, though. Hitting $50,000 today would mean that we have a guaranteed pitch meeting with Revlon to promote Cavatica — an open access data platform that will dramatically improve the cancer research process. We have until midnight. I haven’t given up hope.

My heart may be broken, but I don’t want yours to be. 

There are literally thousands of people who have the potential to read this message. If each of them donated only $10, we would far exceed our goal. There are many times in this life that we are helpless. We sit and watch as good people die from a disease that seems unstoppable. I’m here to tell you that it is stoppable. We are seeing breakthroughs with precision medicine efforts, but if we want them for everyone we must take action. Precision medicine initiatives are only as good as the data that drives them. You’ve seen the photos. Right now, a family sits with their child knowing there is nothing else to be done. For those of us who have been there, there is nothing we wouldn’t do to keep you from knowing that pain. Wives continue on without their husbands because a nasty beast stole them away right in their prime. Children grow up without mothers because cancer stole them from their family.

This project has the potential to help all of mankind. I don’t expect you to devote your life to it. I know you have jobs and kids and other responsibilities. All I’m asking is that you realize what an amazing opportunity this could be for all of us, and maybe skip that extra meal out this week. Donate two days worth of Starbucks to our cause — TODAY. I promise you we will make the very most out of that donation.

You can donate here: https://www.crowdrise.com/DragonMasterFoundation-Revlon2016