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.

Easy Guide to Instagram & Twitter

Uncategorized
No more brain cancer? That'd be super!

No more brain cancer? That’d be super!

We are well into the Microsoft #ChangeYourWorld contest, and there have been a few questions. First of all, yes, this is a real promotion started by Microsoft. You can learn everything here:

https://www.microsoft.com/en-au/windows/upgradeyourworld/nonprofit-resources.html

Dragon Master Foundation is already international, so we are able to participate where some other foundations can’t. We are very collaborative and we will be web-based, which means ultimately, we will be helping researchers world-wide to collaborate. We will have a vast database that will be accessible to folks everywhere – from Dodge City, Kansas to Florence, Italy. Geographically, we reach further than that, but I think that’s a pretty good visual. 😉

Since this is a global competition, we need everyone’s help. Every single vote helps, and we really need you talking about it every day on your social media channels. Here’s what to do:

• If you don’t already have accounts, set up an Instagram account and a Twitter account. They are both free, but Instagram really only works on mobile devices (smart phones, iPads, etc.)

• Once you have your account set up, post every day – once on Twitter and once on Instagram. Your post needs to say these three things:

1. @dragonmasterfdn

2. #UpgradeYourWorld

3.#vote

If it doesn’t say all of those things, the vote won’t count. It also won’t count if there are typos, so please check your post carefully to make sure those three things are exactly like that.

From the rules, I’m not sure if tagging @dragonmasterfdn will count or if it needs to actually be in the text that you post. So to be safe, please put it in the actual post. (Don’t just tag us in your photo.)

• A sample Twitter post could look like this:

Help us win $500K to find a cure for cancer! Tweet: “I for for You can also post on Instagram!

Remember you only have 144 characters to use on Twitter, so you have to keep it short. You can include a picture if you want to (posts with pics get more views), but if you do that , you will  have fewer characters that you can use. “Characters” are letters, numbers and spaces – so each key stroke counts as a character.

• On Instagram, you can use more than 144 characters, but remember, people are on Instagram to look at the pretty pictures, not to read. So make your picture interesting and keep the words short. The picture does not have to be related to the cause, but it certainly helps!

• Dragon Master Foundation can be found at @dragonmasterfdn on both Twitter and Instagram. Please follow us and you will get more ideas on what to post. You can use our posts to re-post on your own feeds.

• Set a reminder on your phone to make the posts every day. We are all busy, and you may forget if you don’t have a reminder set.

Please ask any questions you have by posting below. We have a lot of folks who are just signing up to Twitter and Instagram in order to help us, so the questions you ask will help others, too!

And thank you so much for getting involved with this! It will help a lot of other people learn about our quest to cure cancer, and hopefully we will walk away with $500,000 to fast-track our database!