Signs, Llamas, and Hallelujahs

David's Journey, Dragon Master Foundation

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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.

It’s Kind of a Big Deal

Dragon Master Foundation
Wish I knew who to credit for this pic because it is awesome.

Wish I knew who to credit for this pic because it is awesome.

We get a lot of questions about Dragon Master Foundation, and whenever I have the chance to talk to someone about it, the response is amazing. They always end up saying “Wow, that’s such a big deal!” People are so generous with their support once they understand the project. The problem is, a lot of people don’t understand what we are doing and why it is needed. So I thought I’d take a moment to explain a little bit about what makes this project so special.

When David was sick, we were inside hospitals for days at a time watching people do their jobs. Technology is everywhere – from the patient bedside to databases in some unseen corner of the building. However, all of that technology seems to be locked inside each institution, with very little ability to share information from one hospital to the next.

It is like  being a horse with blinders on. You can only see a small part what’s really out there. You get a myopic view of the world. Unfortunately, that is the world most cancer doctors and researchers face. They long for more information, but it is largely out of their reach.

You may be thinking, “But what about the internet? Can’t they just send their information back and forth?” The short answer is no. Between HIPAA, different technology formats, and the sheer size of data, even the most collaborative hospitals have trouble sharing all the information researchers want to access. Collaboration would mean that a database would quickly need to warehouse petabytes of of information – a task that has only been tackled by the likes of the NSA or Google in the past.

It is an overwhelming task, to be sure, but for the first time in history, it is possible. It is possible to house genetic information and clinical data in one place so that researchers can really see the “big picture” of a patient’s health and furthermore, they can compare that patient to other patients. They can start to see why a drug works for one patient and not another. They can start to make sense out of things that are seemingly random.

It will be four years this September since we were dropped into this cancer world. I’m not a doctor or a researcher, but I’ve talked to as many as I could over that time, and every one of them has said a database like this would be an asset to them. EVERY ONE OF THEM.

And yet, we continue to spend money on tiny projects that help a single researcher or a single hospital. Please don’t misunderstand. Every researcher needs funding. Every hospital needs more help. But this is a situation of not being able to see the forrest for the trees. We need to build an infrastructure for the research data if we ever hope to move at a pace that is faster than cancer.

The good news is, we have made amazing progress. We have joined forces with the Children’s Brain Tumor Tissue Consortium, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Chicago’s Lurie Children’s Hospital, and Children’s Hospital of Seattle to take the database they are working on and grow it to a scale that can help pediatric and adult patients. The data is already being collected, which is a great and wonderful thing. However, it means that we are already at a place where we need vast amounts of funding in order to continue to grow.

I wake up every morning more sure that this database will change the way they do medical research. I have hope that people will begin to understand the vision that that this database represents, and that they will focus on helping us build it. You ABSOLUTELY CAN make a HUGE difference in the fight against cancer. Please share the mission of Dragon Master Foundation. Like us on Facebook ( http://www.facebook.com/DragonMasterFoundation ). Follow us on Twitter (@dragonmasterfdn and/or @amandahaddock ). Host a grass-roots fundraising event. Something as simple as dining out at a local restaurant that will donate proceeds can be a huge help with both raising money and raising awareness. Cancer is a beast that is taking lives. You can be a dragon master. Please join us today!

Cancer is a Completely Solvable Problem

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This is a completely shameless photo of our dog, Cooper. Because everyone reads stuff on the internet that has a cute animal pic.

Do we have your attention now? (This is a completely shameless photo of our dog, Cooper, because everyone reads stuff on the internet that has a cute animal pic.)

Did that headline get your attention? It certainly got my attention when a researcher said those words to me a few days ago. As a lot of you know, we have formed Dragon Master Foundation to build a database that will make cancer research easier, faster, and more effective.

As part of our research into what exists already, we identified a large public resource called canSAR which aims to support cancer research and drug discovery by bringing large volumes of different data together. I have spoken with the leader of the canSAR project, Bissan Al-Lazikani, who agreed with the importance of building a global clinical database to support clinicians and have more immediate return for the patients in the clinic. As canSAR is an open public resource, there are ample opportunities for future links and collaborations with Dragon Master Foundation which we will aim to pursue.

We are still in the very early stages of development, so some would say I shouldn’t be sharing this information with you. I believe, however, that we need all of you to understand what is lacking in the world of research today so that you can help fight for these tools that the researchers need.

There are a lot of really good causes out there. I have friends who are committed to helping the homeless, rescuing animals, or fighting for research dollars for a variety of diseases. I’m asking all of you to put those goals aside for one moment. What if you could really do something that would cure cancer? Not one type of cancer, or one group of patients. But cancer. Period. I think that this database can do that. And there are some pretty respectable researchers who also believe that.

So here’s what I need you to do. Tell people about the Dragon Master Foundation. Share our Facebook page (https://www.facebook.com/DragonMasterFoundation). Follow us on Twitter (https://twitter.com/DragonMasterFdn). Share our vision.

If you are in the medical profession, give us a quote we can use about how this type of database is important.

If you are a patient or caregiver who experienced a “well-oiled” communication machine during treatment, or conversely, a lack of communication between hospitals, please tell us what you witnessed. And please share our vision with any of the doctors on your team.

If you can give, please consider donating toward our database. It is a massive need, and we will need massive funding. But wouldn’t you like to have some small part in bringing about a cure for cancer?

At this point, we are run completely by dedicated volunteers. However, the time is fast approaching when we will need to bring on a project coordinator who can take our project to the next level. Foundation funding is key to making this happen.

Lastly, I’d like to thank all of you who participate in the blog, social media, or other efforts that support Dragon Master Foundation. This is a wild, amazing ride for me and I want all of you to come along. Dr. Anna Barker told me, “Changing the world is hard, but it can be done.” Let’s do this!