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.

White House Champions of Change for Precision Medicine

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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.

For Auld Lang Syne

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I have an app on my phone called “Time Hop”. It goes back in time to year’s past and pulls out photos from your phone or Facebook to show you a little of your personal history. Today, one of the photos it showed me was of my Facebook statuses from 2010. What struck me was how happy they all were. How thankful. How EARLY in the year. You see, all of the statuses in the picture were from the first eight months of the year. David was diagnosed with cancer in month 9.

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In hindsight, I always wonder if I was thankful enough before cancer entered our world. If I appreciated my kids enough. If I knew how blessed we were in spite of our hardships. Then today I saw this recap of my year before cancer. There’s no doubt that I knew what my blessings were. It wasn’t all sunshine and rainbows, but I reveled in them when they appeared.

What really struck me, though, was how blissfully unaware we were. We had “normal” problems. The kind that you can pull yourself up by your bootstraps and get through. And then, David got an excruciating headache that led to three weeks in ICU and brain surgery. All the while, we believed that we would just pull together as a family and get through it.

But cancer isn’t always like that. Yes, being positive and fighting hard is important. I believe that it can make a huge difference in treatment and survival, but it is no guarantee. Cancer sneaks in unexpectedly and steals away your normal. To me, that is the most alarming thing. There was no warning.

In some ways life is just like that. You never know what’s around that next curve. The end of the year seems like a good time to look back over those curves and smile where you can, and cry when you must. More importantly, it’s time to look ahead to see what you can do to smooth the curves in the coming year, both for yourself and for those around you.

For me, looking ahead means finding innovative ways to fight cancer. I know David is looking down on us urging us forward. I know that he would see each life as precious and worthy of the fight. As we enter 2015, I hope that you will join us to make a positive change in the world of cancer research.

Working Together for A Brighter Future

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This week I had the great pleasure of speaking with Dr. Peter Adamson, Group Chair of the Children’s Oncology Group (COG). For those of you unfamiliar with COG, more than 90% of  children and adolescents diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions. Their goal is to cure all children and adolescents with cancer, reduce the short and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer. That matches our mission pretty well, so I was excited to learn where we might be able to collaborate.

COG is currently focused on collecting biospecimens and clinical data. In layman’s terms, they are collecting cancer specimens (tissue, blood, etc) as well ad information on the child’s diagnosis, treatment and outcome. They have collected a massive amount of data over the past 50 years. They have well over a million biospecimens! More than 350,000 patients have shared data with them. They have biorepositories and databases in different parts of the country and work with over 220 hospitals in the US & Canada.

I am very impressed by what they have accomplished, but ultimately, I believe that the infrastructure we are building can improve the work they are doing. Their focus is collecting the specimens and data. Our focus is taking those specimens and data and making them a perpetual resource backed by robust computational power to allow them to collaborate with other researchers and also analyze and visualize the data in new ways.

To give you some idea of the scale of the data, let’s look at the numbers. There are approximately 14,000 children a year diagnosed with cancer in the US. Collecting a biospecimen would cost somewhere in the range of $1,000. (The NIH currently values that at around $500, but the actual institutional cost is thought to be much higher, thus my $1,000 figure.) So just to collect the biospecimens for those patients, you are looking at $140,000 per year. However, that is just scratching the surface of what needs to be done. Those specimens have to be stored (visualize giant freezers with robots to access the individual samples), categorized, and matched with corresponding clinical records.

Traditionally, most hospitals and foundations have been unwilling and/or unable to invest in the infrastructure that it would take to compile this amount of data. COG demonstrated real vision by collecting this data and they have been able to use it to forward science. Dragon Master Foundation believes that additional computational power, or “big data” analytics, will help them find the cures they seek even faster.

Dr. Adamson said he felt Dragon Master Foundation is taking “a sophisticated look at the challenge.” We know that building this type of computational infrastructure will be expensive, but we also know that it will exponentially decrease the amount of time it takes for researchers to collect and query data. Faster answers to their questions means faster cures for us.

There is no doubt in my mind that we are building a resource that will improve cancer research. It ultimately will help cancer researchers throughout the US, and probably throughout the world. It will make the work they have been doing for years more relevant.

To learn more about Dragon Master Foundation, please visit http://www.dragonmasterfoundation.org. To learn more about the Children’s Oncology Group, please visit projecteverychild.org or childrensoncologygroup.org .

People You Need To Meet #43: Karin Forbes

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What do I wish I knew before my husband was diagnosed with brain cancer? I’ll tell you what I’m glad I didn’t know, because these things are too horrible to know in advance, and knowing these things wouldn’t have helped in this horrific journey…

I certainly wouldn’t have wanted to know how quickly he would  lose his ability to talk, to move, and to eat or drink.

I wouldn’t have wanted to know that he may not have been able to see or hear.

I wouldn’t have wanted to know that he would be told no hope, that there was nothing anyone could do.

I wouldn’t have wanted to know he would be suffering seizures, or about the many, many hospital visits.

I wouldn’t have wanted to know that I would have to make life decisions for him that doctors didn’t trust he could make.

I wouldn’t have wanted to know that that my love who didn’t take so much as an aspirin, would be taking long lists of ever changing  medications.

I wouldn’t have wanted to know how this strong man, who took such good care of himself,  would bloat, and have reactions from medications.

I wouldn’t have wanted to know all the nursing skills I would have to perform with on the spot training.

I wouldn’t have wanted to know how my heart would be ripped apart watching the man I loved suffer and wither.

I wouldn’t have wanted to know that I would see his beautiful eyes fill with so much sadness as he knew he was dying.

I wouldn’t have wanted to know that his life would be over long before his death.

I sure wouldn’t have wanted to know I would lose my husband, my children’s father, my best friend, my confidant, my everything, my world, five months from diagnosis.

I wouldn’t have wanted to know we would never hear, see, or feel anything about him,  ever again.

I wouldn’t have wanted to know the enduring pain to my very core.

I wouldn’t have wanted to know that this man who worked hard every day of his life, would never see one day of his retirement, or one of our retirement plans come to be.

I wouldn’t have wanted to know that our family life as we knew it, would be soon be over.

I wouldn’t have wanted to know my children’s pain from the loss of their dad.

I wouldn’t have wanted to know that some would  add to our pain with words or acts or lack of either.

I wouldn’t have wanted to know the greed some would have after the death of my beloved.

I wouldn’t have wanted to know how some would disappear after his death.

I wouldn’t have wanted to know that my future entailed widow fog and being unable to concentrate.

I  wouldn’t have wanted to know that I would lack desires and no longer love life.

I wouldn’t have wanted to know that I would have post traumatic stress.

I wouldn’t have wanted to know that my health would suffer, and I’d be badly hurt in an accident, or that accidents are common among the grieving.

I wouldn’t have wanted to know the long duration of grief,  and depression I would endure.

I wouldn’t have wanted to know because I needed hope to fight for him. If I had known these things, I would have been too distraught  to function. If this horrific  journey had been given to me in black and white print, I still could not have known the depths of this nightmare. I had to believe in a miracle; I had to have hope.

How I wish that I and the others who suffer had never heard of brain cancer because there were no such thing.

There is one thing I wish I knew…
The one thing I wish I knew was that I didn’t have to be so alone with this. There are online groups of people who share this grief, some are now fighting this monster. They give each other encouragement, love, and knowledge that I so needed in this terrible time.

I now belong to a group of women caregivers who are all on,  or have been on this same terrible road brain cancer takes us down. It’s heartbreaking because I know what they are going through.
I also know that unlike me, they aren’t alone because we band together for each other. We are special Warriors who all wish we had never been in this horrific battle.

Did I learn anything on this horrific journey?
I already knew the depths of our love, and that we would die for each other. I knew of his strength and his heart. We had found out long ago that material things just don’t matter. How blessed we were to have each other and such a deep love! We already cherished every day together.
We didn’t need illness to bring that realization.

I learned that GBM is horrific beyond words, not at all rare, and a thief of the very worst kind.

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!

Five Reasons Why You Should Join the Fight Against Cancer

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20140629-230537-83137451.jpgWhen we first announced the name of our foundation, people thought we were a little crazy. I understand that the name is unconventional, but so is our goal. It is different. Some might say impossible. So our name reflects not only the enormity of the task, but also that we plan to be successful.

Scientists have been fighting cancer for decades. We have made some advances to be sure, but we are a long way from declaring victory. There are many warriors in this battle, but no united force bringing them together. We live in the Information Age, but research information is in silos that are hard to access. We need the power of the data in every researcher’s hand.

I believe that most people believe, like I did, that there are vast resources available to cancer researchers. That is not the case. There are excellent pockets of data out there, but they are kept at institutions that have limited abilities to share the data with others.

From the National Institute of Health to St. Jude to your local hospital, information is being gathered. It may or may not, ever make it beyond the walls of that particular institution, though. We need a revolution in our healthcare system. That is why we formed Dragon Master Foundation, and that is why we need you to get involved.

Reason #1-
However small we are, we should always fight for what we believe to be right. And I don’t mean fight with the power of our fists or the power of our swords…I mean the power of our brains and our thoughts and our dreams.” – Cressida Cowell
We have to imagine a world where the cure for cancer is found. What will that world look like? We believe that this is an exciting time where data can be truly harnessed by a new generation of computers. Where a researcher’s theory can be tested, enhanced, and modified within the confines of a database, sparing thousands of manhours of research.

#2. “The Alpha protects them all.” – from How To Train Your Dragon 2
I take this quote two different ways. The first is that the largest cancer research organizations should lead the way for us all. I believe they are trying, but they haven’t found a way to bring it all together. The movie this quote is taken from shows a new “alpha” coming to power. The new Alpha isn’t bigger, but it brings together the power of the group. Above all else, it wanted to protect those it loved. Anyone who has watched a loved one fight cancer can understand this need to protect. Some of us have been powerless in the fight. There was no alpha to bring the group together. Dragon Master Foundation wants to change that.

#3. “I’ve coulda gave up then, but then again I couldn’t have ’cause, I’ve traveled all this way for something.” – from the song “On Top of the World” by Imagine Dragons
Cancer has taken it’s toll on my family’s life. It is a horrible and devastating reality, and it will strike one in three Americans. How many people are there in your family? Those aren’t great odds, are they? I was ignorant about cancer before my son was diagnosed. We travelled through Hell, and it would be the easiest thing in the world to run and not look back. But I’ve travelled down this road for some reason, and I believe the reason is to rally the troops. You may choose to wait until this battle comes to your door, but I’m praying you won’t.

#4. “To have a child is the greatest honor and responsibility that can be bestowed upon any living being.” – Christopher Paolini in Eragon
It’s a popular saying that “it takes a village to raise a child”, and if that is the case, then we are all parents – whether or not you have a biological child. We are all stewards of the Earth and those who walk upon it. There are many worthy causes to fight for, but among them, cancer is one of the most deadly to the most innocent among us. There are few things to compare with cutting a life short. We ruthlessly pursue murderers and terrorists, but we are not pursuing cancer with the same vigor. Cancer killed my child. I’m fighting so that we can stop it from killing yours, too.

#5. “He doesn’t understand that he’s the one that has the power to stop it. He simply can’t imagine that one little boy could be that important.” – from the Neverending Story
It is hard to imagine how you make a difference in the fight against cancer, but you do!! With every person that stands up in the fight, a researcher is more energized in their work. With each person who commits their meager donation to the cause, we inch toward our goal. With every share of a blog post or Tweet or status, you tell the story for people who can no longer advocate for themselves.

The fact is that you do make a difference. Your voice, your time, and your resources matter a lot in the fight against cancer. We appreciate each and every one of you who have joined in this fight with us. And if you would like to learn more, read about our goals at http://www.dragonmasterfoundation.org

 

Can You Hear Me Now?

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Have you been missing our new posts in the #52Blog Series? That’s probably my fault. In an effort to make sure people understood what we are doing, I had “pinned” one post to the top of the blog. Unfortunately, that meant that all other posts were so low on the page that you wouldn’t see them unless you scrolled down. My bad!!

We will be on week #10 with this Sunday’s post, and it is from a lady who has been by the side of her brother and her husband as they battled GBM. This “rare” cancer has really tried to take this family down, and her spirit is just amazing. You won’t want to miss reading her story.

So please watch for a new post on Sunday, and if you haven’t been seeing the new posts each week, you might want to go back and catch up on some of the great folks we’ve introduced so far.

Five Things You Can Do To Save Lives

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Since Alexander Moore already took the best blog title (see his post here:https://alexandamymoore.wordpress.com/2013/05/01/may-day-may-day/#comment-808), I’m going to go with the tried and true list. You see, today is May 1st. The first day of what the U.S. calls Brain Cancer Awareness Month. For many of us, it is every month because we have seen first hand the damage this particular cancer can do.

I’ve talked about this before, but here’s a little recap if you are new. Brain cancer does not discriminate. It can happen to anyone at any time. They don’t know what causes it. You can live a healthy lifestyle or be a complete degenerate.

I have a few theories on why you don’t hear about brain cancer much. Bear with me on this for a minute because I believe it is part of the reason why brain cancer doesn’t get as much attention as some of the other cancers.

When a person is diagnosed with brain cancer, it is frequently in a stage that requires immediate attention. There are not clear winners on what treatment to choose, so that means you have to research for yourself what course of action to take. Unfortunately, a lot of the reasons you would be diagnosed with brain cancer are also things that can impact your ability to reason through these situations. Fatigue, extreme headaches, and confusion are a common part of the symptom package sometimes rendering the patient a less than active participation in the search for treatment options. Add to that that the patient may be too old or too young to use today’s research tools effectively, and you can begin to see a problem.

It doesn’t stop there, though. Let’s say you are patient who doesn’t have debilitating symptoms (like my son was) and you are of an age to both understand some of the research and use the research tools (like some of my friends are). Good for you! But now, you have to decide if you want the world to know that you have a disease that could impact your cognitive skills. How will your employer react? Your friends? If you have a “good” prognosis, you may decide to tell as few people as possible so you can get back to “normal” as soon as possible. I can’t say that I would do it any differently, but it is one less voice in the fight. No, it’s more than that. Because if that person doesn’t speak out against brain cancer, then there is a large possibility that their friends and family won’t either.

But let’s go back to those too young or too old patients. Why don’t those families speak out? Well, a few of them do. A quick search will find stories of brave little tykes running touch downs or visiting Disneyland. But for every story you see like that, there are more who are too sick to do that. Or who don’t want those precious few days they’ve been given to be taken away by the media and strangers. Or who are just simply too overwhelmed with treatments and symptoms to find a way to reach out.

And those older patients? I think more and more of those families ARE speaking out thanks to social media. But the mainstream media doesn’t care that your 75 year old dad is dying. That is an “acceptable” age to die. Nevermind that people in your family live into their 90’s and your dad was out playing golf the day before he was diagnosed. I know this sounds a little cynical, but I really believe that is the case. I give a lot of credit to the TRBC “sisters” (find them here:https://www.facebook.com/pages/TRBC-for-TRBC/179797368810544) who united via Facebook because they had each lost their dad to brain cancer.

We are finding our voices, but we need your help. It’s not even hard! Here are 5 EASY things you can do to raise awareness for brain cancer research:

1. If you are on Facebook, go like the Operation: ABC “Annihilate Brain Cancer” page (https://www.facebook.com/OperationABC). It lists events around the country and tries to give a unified voice to the brain cancer family. (Oh yeah, we’re a family. You need everyone you can get to help fight this beast.)

2. Sign up as an advocate with the National Brain Tumor Society (http://www.braintumor.org/advocacy). This is NOT scary. You are adding your name to a mailing list, and they will email you when they need your help. “Help” usually consists of using an online form to write your Congressman and encourage more funding for research. Simple as that.

3. Help make a cool postage stamp that says “Stamp Out Brain Tumors”. All you have to do is sign the petition here: https://secure2.convio.net/bts/site/SPageServer?pagename=AwarenessStampPetition

4. Wear Grey Every Day in May. Ok, you don’t have to wear ALL grey. But wear something grey EVERY day. Tell people why you are doing it. Do it for awareness. For solidarity. Do it to show the world that fighting brain cancer is important. Grey isn’t a very noticeable color (like pink) so it is going to take A LOT of grey to get noticed. But we can do it!

5. Attend an event or sponsor one online. I happen to know that even $5 would mean the world to the people who are organizing an event or running a race. For $5, you can tell them that what they are doing matters. Of course, you can tell them with more money, too, but you get the idea.

You can even sponsor our Concert for the Cure online:

http://www.indiegogo.com/projects/concert-for-the-cure-wichita/x/3067213?c=home

I’m gonna go make a donation to a friend’s team right now. Why don’t you join me? 😮

 

Addition: The lovely Amy Moore reminded me that you can also show your support by changing your Facebook profile and/or your cover photo to show your support. If you don’t already have one, there are some great images here: https://www.facebook.com/media/set/?set=a.457134687694742.1073741826.109926575748890&type=1