What No One Will Tell You About Clinical Research



Precision Medicine initiatives start with a sample, be it blood or tissue, some type of specimen to give scientists the genomic data they need to work from. Traditional clinical research starts with specimens that need to be sequenced, then work is done in model systems (cell or animal), before finally being published in journals.

Right now, being published in a medical journals is a competition. The first to discover and publish are almost always the ones to get funded. So the scientists with the most data tend to be the ones with the most funding. The reason adult studies get funded so much more often that pediatric ones could boil down to a reason as simple as that. There is simply not as much data, or institutional infrastructure, around pediatric data.

The labs that get funded are the ones with the most data published. But what if we could flip that model? What if we rewarded researchers for sharing that initial raw data? What if researchers empowered each other instead of having to compete for the same research dollars?

Dragon Master Foundation was formed with the purpose of building an infrastructure for sharing data between researchers, but we’ve learned that the problems are more intrinsic than that. Scientists are pushed to publish their work, but in order to get it past peer reviews, they often simplify the work so much that their results can’t be replicated. Over time, we’ve created a system that virtually requires all researchers to work independently, first because of funding, and second because they can’t simply pick up where someone else left off.

The more I learn about how our researchers have to fight for resources and funding, the more concerned I am. It also makes me that much more motivated to fund a new system. A system that rewards researchers for working together. A system that empowers them to do better work with faster results. A system that will pool resources instead of building data silos.

We want to encourage foundations to put their funding behind researchers who are willing to share data. If we want to break down the walls between the silos, we have to reward the ones who are doing it. We need to stop sending our dollars to institutions who won’t share. We need to empower the work to be done in the cloud where it can be interactive. We need to treat tissue donations as the rare and valuable resource they are, and give them a place where they can be accessed for future generations.

People seem amazed at how quickly we have grown, but it is because of the foundation built by the groups who came before us. We didn’t have to start from scratch. There were already visionaries out there who just needed help to take things to the next level. We recognize and applaud the efforts of the nonprofits who have been building tissue banks and funding sequencing of those biospecimens. We commend the hospitals who took those first shaky steps out into the frontier of collaboration. Most of all, we thank the technology pioneers who have made this type of global collaboration more than just a dream. It is becoming a reality, but the timeline depends on all of us. We have a database that is ready to be used by researchers. What we need is the funding to put it into the web and grow it to include as many records as possible. Each record that we can add empowers the data a bit more and puts us into a space where big data analytics can begin to transform research and medicine. It is what we need to truly empower personalized medicine.

You may not think that you have the power to affect medical research. You might not be a scientist or a doctor. Well, neither am I. But I’m driven to keep families from knowing the devastation ours has known. You CAN make a difference, and oh, I hope you will.

Dragon Master Foundation has a 5K this weekend in Wichita, KS, but if you can’t make it, you can still participate as a virtual walker or runner. That will get you one of our super cool Tiki medals. Or you can host your own event. Or volunteer. Or spread the word on social media. Every action you take makes a difference.

An Admiration of Breasts



I had the honor of meeting Mark in DC last month. I always appreciate his blog posts, but none more than this. Please get involved. It doesn’t matter how busy you are. You can register your grocery shopping card to benefit research, or recycle, or just post more on social media. Every action brings us more awareness and closer to the cure.

Originally posted on Life in Portsong:

Like a pimply-faced teenager, I find myself once again consumed with breasts. It has been nearly 35 years since I went from a jostling, happy 12 year-old to a smug, confused teenager who finally noticed there was a difference between his buddies and the girl next door. Ah, Dawn Holstead. For so many years, Dawn played the same sports and games the rest of we boys did. She pretty much dressed like us and besides having longer hair, she looked a great deal like us. Since it was the 70’s, even shaggy hair wasn’t a great differentiator.

Then one day, I noticed she was…different. It was like something grew overnight. Yes, Dawn had started her inevitable change into a woman. Things got really dicey after that. Her ascent into womanhood was very inconvenient in the neighborhood because she decided to go all out and be a girly-girl instead of our fourth man. Two-on-two basketball became one-on-one with someone sitting out…

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Breast Cancer Resources


If you’ve read much of this blog, you know I’m pretty focused on pediatric brain cancer. That’s our starting point, both from a family’s perspective and from building of the database. But I have several friends in different stages of breast cancer diagnosis/treatment right now, and I really believe that our database will advance to the point where we are helping them, too.

For the moment, though, my resources don’t really extend into that world much. So I thought I’d reach out to the readers to see what words of wisdom you may have to share.

I found this website that I like: http://www.breastcancerdeadline2020.org/breast-cancer-information/quality-care-guide/access/getting-comprehensive-care/?referrer=https://www.google.com/

It’s got a good overview of what to look for when choosing a doctor, but there’s always more to it than what shows on “paper”. So here’s your chance to let us know what went well (or what went wrong) with your experience with breast cancer. Please comment with your experiences so we can help each other.

And yes, it is still Childhood Cancer Awareness Month, but cancer doesn’t wait for the appropriate month to rear it’s ugly head. I will take this one more opportunity, though, to ask you all to please vote (or continue voting) for Dragon Master Foundation on Instagram and Twitter. You can vote once per day until 9/23 on each platform by posting these tags: #vote #UpgradeYourWorldUSA and @dragonmasterfdn

If you’re an overachiever, you can also vote for our Australian friends by using: #vote #UpgradeYourWorldAU and @braintumourahoy

And you can still add: #HonestLovesMax to any Tweet or Instagram post through the end of the month.

Today is Special



If you are reading this, then you have access to the internet. You have vision (or a really good adaptive reading program). You have some discretionary time. You can make a HUGE impact on the world today. How? Just make a Tweet and an Instagram post for these causes:

  1. For Dragon Master, post: I #vote for @dragonmasterfdn to #UpgradeYourWorldUSA with the power of #bigdata
  2. For Max Love, post: #HonestLovesMax
  3. For Miss New York, post: Miss New York #MissAmericaVote

What will those three things do? 1. You could help win $50,000 for cancer research. 2. Every #HonestLovesMax post gets $1 donated to the Max Love Foundation 3. Miss New York has chosen childhood cancer as her cause, so she will bring a national voice to these suffering kids.

You may not think this is a big deal, but it is! Let me tell you why. This kind of project (internet/social media voting) doesn’t get a ton of attention. People vote once or twice and don’t vote steadily until the deadline. So it the prizes are sort of up for grabs until pretty close to the end. One big push from any particular group could see them leap ahead of the others. We have had consistent support, but the Upgrade Your World contest doesn’t end until 9/23. It is crucial that we continue to add supporters as the contest goes along. So please set a reminder to vote every day. And please ask your friends to vote. Ask multiple times because most people won’t see the first post. (They say the life of a Tweet is less than 3 hours, so you could post several times a day, and still not be seen by all your followers.)

If you want to help, but you aren’t sure how, then let me know. I’d be happy to help you get up to speed!


The Miss America Vote ends today, but you can vote for Dragon Master Foundation until 9/23 and tweet for Max Cure until the end of the month.

People You Need to Meet : #46 Holly J. Gainsboro


What I wish I knew before my late husband was diagnosed with a brain tumor…

My husband, Steven, was diagnosed with an incurable brain tumor on February 12, 2009. We were blindsided by this news – his primary care physician said the MRI report showed a cyst or abscess and sent us to a local neurosurgeon. We sat in the examination room prepared to hear that it was nothing to worry about…..what we heard was “you have a malignant brain tumor”…and then all I heard was “wah, wah, wah” (similar to what the   adults sound like in the Charlie Brown holiday specials on TV). Sharing the news with our children, other family members and friends was excruciating – how do you tell a 12 and 16 year old that their father has a mass in his brain that needs to come out? We spoke carefully with our children and gave them only the information necessary – Daddy has something in his brain and will have surgery. He will be fine! Not sure if they bought it or not, but they have both shared that they were grateful that we didn’t go into further detail with them and were optimistic about the outcome and longevity of Steven’s life.

I kept to myself for quite some time as I needed to muster my strength and hope in order to keep him with me and our children for as long as possible. I did extensive research on the disease and its treatments. I traveled back and forth to Duke’s brain tumor center and hospital with Steven, and I tried to maintain our lifestyle and acclimate to our new normal. At the suggestion of our clergy, I created and maintained a Caring Bridge page so that family and friends could follow our path. When, after 7 or 8 months post diagnosis, the myriad of emotions coursing through my body became more than I could handle I finally sought out others who could possibly understand my experience. I began an online search for support groups. I came across a few but www.cancercompass.com drew me in. It was there that I found so many who seemed to be living my life – my beautiful, yet painful life. A life of uncertainty, a life of hope, a life of fear, a life of “this can’t be happening” and “nobody knows how I feel deep in my heart, nobody!” I no longer felt isolated as I shared my own stories, asked my own questions and provided answers and comfort to others.   Once I allowed myself to open up to these women traveling this same and yet different journey, a life-long bond was formed – a sisterhood. As author, Rachel Naomi Remen wrote “Everyone alive has suffered.  It is the wisdom gained from our wounds and from our own experiences of suffering that makes us able to heal.  Becoming expert has turned out to be less important than remembering and trusting the wholeness in myself and everyone else.  Expertise cures, but wounded people can best be healed by other wounded people.  Only other wounded people can understand what is needed, for the healing of suffering is compassion, not expertise.”

Steven and I already knew that there were many gifts that come with a cancer diagnosis – yes, you read this correctly, there are gifts, but one has to be open enough to recognize them. The gift of waking up beside one another each morning and going to sleep together every night. The gift of sharing our love with each other and our children. The gift of being able to say all the things we wanted to say (of course, there is never enough time to say it all but we shared a lot with one another over those 22 months), and the gift of being part of a community – a brain tumor community. I cannot imagine how I would have managed through the remaining year of Steven’s life, as well as after his death, without my GBM soul sisters. English novelist, Mary Anne Evans, better known as George Eliot said “What do we live for, if it is not to make life less difficult for each other?”

One cannot travel this road of illness and caregiving alone… it takes a village, truly. I am eternally grateful for my internet village and my local village. As I write this six and half years years post diagnosis and four and half years after Steven’s death, I still recognize the blessings that come with this life I am living. My local community and my internet family made life less difficult and offered me refuge when I needed it most.

For anyone caring for a loved one with a life threatening illness, you do not need to struggle alone. There are those waiting in the wings wanting to help, love, support and guide you. Be gentle with yourselves as you learn to navigate your “new normal”. There are so many just like you wanting to be comforted and wanting to comfort. Trust that your journey will bring you to those people.

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!


  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

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:


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


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!

White House Champions of Change for Precision Medicine

The Precision Medicine Champions of Change with Dr. Francis Collins.

The Precision Medicine Champions of Change with NIH Director Francis Collins.

I have always been proud to be an American. I like to think that I’ve done things for the betterment of our country through the years. For more than a decade, I worked with paralyzed veterans, and I like to think I made a positive impact there. It is rare that any of us get any major recognition for our work, but on July 8th, I was invited by the White House to speak about my new passion – cancer research. Along with 8 other Americans, I was recognized for making a positive impact on precision medicine. The award was a great honor, and it was so motivating to be in the room with so many passionate, innovative people!

While the experience is still fresh in my mind, I wanted to share some of it with all of you. As you might imagine, an honor like this was uplifting and also a little intimidating. I mean, the White House! I had been as a visitor, but never as a guest! We had specific times that we were allowed to enter, based on what we were doing that day. I was allowed in early, but the folks with me had times staggered throughout the day that they could enter.

Richard was with two key players in the database effort – Adam Resnick and Jay Storm. I was so glad to have all of them there to keep my thoughts on track. Talking with them is so invigorating! Their clarity of vision and intense desire to help children is so motivating. I wish I could relate their passion to everyone. Being in that environment is like  watching a hot air balloon come to life… Filling and filling until it rises off the ground and soars to its higher purpose. We all have that purpose inside us, and being with others who can help us see our purpose is one of life’s most amazing gifts.

So they were with me in spirit, but I entered the building alone. After a security check, I was in and looking for our meeting room. The Champions gathered waiting for our turn to be filmed for a quick segment on precision medicine. Not sure when that will be available for viewing, but it was a good way to start the day.

After that, we went into round table discussions on various aspects of precision medicine. Richard, Adam, and Jay were all in the building in time to participate in these sessions. There was valuable information shared, but the sessions were too short to really hear from all the participants. There were many people in the room that I wanted to hear more from. I’m hoping that we will have a chance to connect after everyone returns to their normal lives.

We had a quick lunch break but the guys and I had gotten separated. Luckily, that is about the time that Kevin Beezhold arrived. Kevin is one of the people who nominated me for the award so it was great to get to meet him in person. He and I discussed his thoughts on my upcoming panel questions, and it was good to get his perspective.

By this time, we were able to reconnect with Richard, Jay, and Adam. One last pep talk and I was off to meet NIH Director Francis Collins! He was very aware of my personal story and seemed receptive to Dragon Master’s database project. I got the chance to tell him that we would love to work in conjunction with the NIH and he seemed receptive to that idea.

A portion of the afternoon is available on YouTube: http://bit.ly/1fv5nne

The room was filled with passionate people who care deeply about making a positive impact on healthcare and precision medicine. And oddly enough, they seemed to be mostly in agreement on the changes that need to happen:

  • greater sharing of data, especially to new populations of people like patients and their families
  • education of the general public so they will understand their rights when it comes to data
  • special care to include parts of the population that may feel alienated from the process

I’m proud to say that the database we are working on will definitely address the data sharing issues. I hope that as we are building it we can also help people understand their role in how this data can be used. We want to include everyone in the process of collecting and using the data, so I hope that we can be transparent in the process and help everyone feel secure about their choices to share data.

In an effort to help people understand why this is all so important, I’m going to be making some videos about our database and how it can be used. We will be taping some of these videos at WSU on Thursday, July 16th at 10am in the Rhatigan Student Center. I’d love it if you could join us, and ask any questions you may have about Dragon Master Foundation and our database.