I Got Nothing

Dragon Master Foundation, Lessons Learned

  As I sit here with a riot of thoughts, I realized none of them were really cohesive enough to make a decent blog post. When I tried to find the right words, my brain came back blank. I got nothing. Why is that? 

Part of it is because what half of the world mostly wants to hear is the good and positive stuff we are doing to change the world. That’s fun to write, but it doesn’t seem to spur people to action. The other people in the world want to hear the horrible stuff. I’m a bit appalled at the number of supposed childhood cancer awareness advocates on social media who really don’t want to share anything other than pictures of dead and dying kids. It’s disgusting, and yet they have tons of followers.

Tonight I don’t have a story that would fall into either of those categories. There was no amazing advancement today. None of the kids I’m following died – praise Jesus! No, today was simply a day where parents I know watched their children play or eat or go to school, knowing that there is a monster growing inside of them. A savage, bloodthirsty monster slowly changing their brain. These parents live every day in a place of panic you can only know if you have been there. Doctors look at you with sad eyes. You know the look most people get when they go on hospice, or run out of treatments. Our kids and their parents get those looks on the day of diagnosis. Because while there are treatments, they are not highly successful. They try them because once in a while, the treatment will work. If we could see each child on a molecular level, we might be able to figure out why one child lives while many others die. That’s what Dragon Master Foundation is trying desperately to do. And we are desperate. We know the panic. The fear. The absolute powerlessness. 

I spend a lot of my time trying to help people understand that we are at a critical juncture in time. We have a chance to impact lives in the most real way imaginable. The work we are doing alongside many partners will impact the way research is done. We are flipping the model. The old way isn’t good enough. We have other tools – better tools- that are within our reach. We could get there faster if people would just pay attention. It is hard to remember to do something like vote on social media every day. But it’s not nearly as hard as facing someone with a cancer diagnosis knowing you didn’t even try.

Tonight I feel both blessed and disappointed. Blessed by so many people who went truly out of their way to help us with our bid to win $500,000 from Microsoft. And my heart is sorely disappointed in those who didn’t make the slightest effort to help us in this or other attempts. You’re busy. I get it. I used to be “busy”, too. Ironically, I’m busier now that I have ever been in my life. It won’t bring my son back. But it will save someone else’s child. How soon it does is up to each of us. 

We’re Making A Difference!

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  First of all, let me just say thank you to all of our supporters – old & new – who have been helping us with the #UpgradeYourWorld social media challenge! We are definitely making an impact, and Microsoft has already made. $500 donation to Dragon Master Foundation. They’ve also offered some help with some other small projects! That’s amazing! Just a couple of weeks ago, they probably didn’t know we existed!

Folks keep asking how we are doing in the contest, and I’ve gotta say, it’s hard to tell. It seems like some of the groups that have a lot of posts don’t qualify because they are not international organizations. Dragon Master Foundation IS an international organization. We have a participating hospital in Italy, and all of our data will be accessible via the web – making it a resource for researchers around the world!

We are so excited about all the new people who have heard about Dragon Master Foundation and our quest to end cancer. We are starting with pediatric brain cancer because it is one of the most deadly, but we are adding adult records and other types of cancers/diseases. It will be a one-stop shop for disease research when we are done. We have already started a process with other rare disease groups to get their data into the database. It’s going to be epic!

But we still need your help – and a lot of it! Please post EVERY DAY, at least once per day, to vote for Dragon Master Foundation. Only one post per day/per social media platform will count as a vote (1 for Twitter & 1 for Instagram), but the more you post, the more people will see it. So feel free to post in the am and pm. 

We are super excited that so many of you have signed up for Twitter and/or Instagram just to help with this contest! If you are wanting to sign up and help, it’s not too late! Here’s all you need to do:

On Twitter, post:

I #vote for @dragonmasterfdn to #UpgradeYourWorld by bringing the power of big data to cancer research.

You can phrase it differently if you want, and if you are short on time, just tweet:

#vote @dragonmasterfdn #UpgradeYourWorld

Including a picture is great, but not required on Twitter.

On Instagram:

Upload any photo you want and then as the caption, write: 

I #vote for @dragonmasterfdn to #UpgradeYourWorld by bringing the power of big data to cancer research.

On Instagram you can add a lot more hashtags, so feel free to add tags related to the picture or to the cause. We’ve added #Disney & #Avengers to pics that showed kids in costumes. Or #gogold & #childhoodcancerawareness are good ones for childhood cancer. If you are more focused on brain cancer, #braincancer, #braintumorThursday or #btsm are all great tags.

Only new posts count – liking and retweeting don’t count as votes. Overall, the number of votes is very low, so we could make a huge difference by getting a large number of people involved – even this deep into the contest. Please keep sharing and asking others to share until 8/23! 

Thank you all for helping us!💖

Easy Guide to Instagram & Twitter

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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!