Sorry for the lack of blog posts lately. Lots going on, most of which gets posted to some form of social media or the other, but I wanted to make sure you non-social media folks saw this! We partnered with a class at the University of Alabama to make a video to help explain what Dragon Master Foundation does. We think they did a great job… let me know what you think!
Imagine for a moment that you were diagnosed with cancer. (I pray this is never real for you.) You are sitting with your doctor, and he gives you your treatment options based on what they think might work for you. You’re given the odds based on every other person who has ever had that type of cancer. What would you think?
I have not been diagnosed with cancer, but my son, David, was. As his parent, it was my job (along with his other parents) to choose a course of treatment to give him the best chance at survival and the best quality of life. They told us the odds – that he would probably die within the year. We chose to believe in a better outcome, and so did David. We studied everything we could get our hands on to improve his odds. And we did, but only for a while. David died 20 months after being diagnosed.
His odds were based on every other person who ever had that disease. He should have lived longer because he was young – just 16 at diagnosis. But I know others who were much older and lived much longer. Why? If you were diagnosed, wouldn’t you want to know why some people live longer?
In essence, that is what Dragon Master Foundation is trying to do. We are helping fund a database that will help researchers discover why some patients respond well to a drug and why some don’t. The answers are there…in our DNA. The problem is, most hospitals only have access to a relatively small number of patient records. One hospital alone will never accumulate enough data for true “big data” analytics. Because of the multitude of cancer types and subtypes, even most consortiums don’t really have enough data to see the big picture. And yet, you will see and hear about more consortiums formed all the time. More efforts to amass that kind of data.
You might think that we are just one more effort, but let me tell you why we are different. We aren’t just a consortium. Yes, we do have certain hospitals who have agreed to the strict standards for data collection and sharing. But unlike a traditional consortium, the records being collected are available for researchers at other institutions. Virtually anyone with need can access this data. At this point, there are over 1,400 subjects in the database, but that number is growing every day because more people are diagnosed every day.
When a diagnosis comes in your world, do you want statistics based on every other person, or do you want to know what treatment will work for you? Help us build the resource today so that we all have a better chance at survival tomorrow.
I am honored to share this picture of Jonny with you all again. You may know that he is on hospice care now. If you would like to send a kind word to his family, you can do so here: https://www.facebook.com/projectteamjonny
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.
Brain Cancer Awareness Month is, at best, bittersweet. A time for us to bring awareness to a disease that takes a devastating toll on families. It is a time for us to celebrate the victories of those who are living with this disease and at time for us to remember those who were taken by it.
I will be posting a lot this month about the brain cancer warriors who have crossed my path, and I will try to bring awareness to the disease and to events happening around the country. Everyone can wear grey and talk about brain cancer awareness month, but hopefully, by posting this list, you may also be able to find an event near you to attend. Please also consider changing your social media images to a grey awareness picture. If you Tweet, I’d love to connect with you on Twitter. Tweet me at @AmandaHaddock and you can use hashtags #btam (for brain tumor awareness month) and #BrainTumorThursday – a day each week throughout the year that we raise awareness.
If you know of an event that isn’t on the list, please message me so I can add it. I’m pretty sure I’ll be adding events all month, so please bookmark this list and check back!
May 8 – Go Grey for a Day – Make sure you wear grey on this day and tell people that you are doing it for brain tumor/cancer awareness
May 15 – Webinar to learn about the latest in collaborative brain cancer research – http://bit.ly/1dLwolc
Tune in to Catch The Brain Wave each Friday from 6-7pm EST on WESS 90.3 FM LIVE in Pennsylvania!! Listen on the web here: http://tunein.com/radio/WESS-903-s28605/
Look for ways you can contribute to your favorite organizations every day. There are too many organizations to list all the possibilities, but here are some ways you could help Dragon Master Foundation:
– Following us on Facebook, Twitter, or Pinterest
– Choosing us when you shop on AmazonSmile
– Recycling for us with our free shipping program
– Register your Dillons card using our #11547 – a lot of grocery stores have this option. If you don’t see your favorite foundation listed, tell them, so they can get signed up!
– Do your intent shopping with iGive
Also, check your favorite foundation’s website for other promotions that may be happening. For example, Dragon Master Foundation has the opportunity to win a unique piece of dragon art created just for the foundation! Check it out here.
Ok, now for a state by state listing of activities you can participate in:
May 2 – Bay Area Brain Tumor Walk – http://events.braintumor.org/bay-area-brain-tumor-walk/
May 3 – Los Angeles Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1980&pg=entry#.VUMDZ2TBzGc
May 8 – Striking out Pediatric Brain Cancer with the Los Angeles Angels – http://www.eventbrite.com/e/striking-out-pediatric-brain-cancer-with-the-angels-maxlove-project-and-the-mckenna-claire-tickets-16325952363
May 16 – Come Fly With Me Party with a Purpose – http://mckennaclairefoundation.org/events/come-fly-with-me-5th-annual-party-with-a-purpose-051615/
May 30 – San Diego Brain Tumor Walk – http://events.braintumor.org/san-diego-brain-tumor-walk/
Sharing Hope Walk the Walk Talk the Talk – http://hope.abta.org/site/TR?fr_id=3330&pg=entry
May 9 – 17th Annual Vernon Hills Brain Tumor Walk – http://www.abta.org/get-involved/events/17th-annual-vernon-hills.html
May 13 – Dine out at Kouri’s in Pekin – https://www.facebook.com/events/840909205993896/
May 15 – 3rd Annual Act for Alan Fundraiser – http://www.abta.org/get-involved/events/3rd-annual-act-for-alan.html
May 17 – Join the Voices 5K in Chicago – http://www.voicesinmotion.org/site/TR?fr_id=1291&pg=entry
May 30 – Cocktails for a Cause – https://myab.co/events/EC/
May 1-3 – Lambda Chi Alpha Teeter Totter – https://www.indiegogo.com/projects/lambda-chi-alpha-teeter-totter-a-thon-for-abta
May 9 – Race for Hope Des Moines – http://www.raceforhopedsm.org/
May 3 – Avengers Age of Ultron Movie Screening – http://www.dragonmasterfoundation.org/events/
May 2 – Brain Tumor Alliance 5k – http://events.braintumoralliance.org/site/TR?fr_id=1160&pg=entry
May 17 – Boston Brain Tumor Ride – http://events.braintumor.org/boston-brain-tumor-ride/
May 2 – BT5K – http://hope.abta.org/site/TR?fr_id=3183&pg=entry
May 17 – MN Brain Tumor 5k – http://mnbraintumor5k.com/
May 2 – North Mississippi Kilt Walk & Fun Run – http://www.kiltedforbraintumors.com/
May 16 – Desert Gray Matters – http://wizathon.com/walktoendbraintumors-nv/
May 30 – National Walk to End Brain Tumors – http://www.wizathon.com/walktoendbraintumors-nj
May 17 – 11th Annual Team Billy Ride & Walk for Research – http://www.braintumorcommunity.org/site/PageServer?pagename=BTR_SS_Homepage
May 3 – NC Triangle Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1990&pg=entry#.VUMC6mTBzGc
May 24 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-nd/
May 18 & 19 – Joggin for the Noggin Benefit Dinner – https://www.facebook.com/events/350866698444089/
May 1 – Brews for Brains – https://www.facebook.com/events/1377664142561766/
May 2 – Avengers Age of Ultron Movie Screening – https://www.eventbrite.com/e/the-avengers-age-of-ultron-2015-3d-private-movie-screening-at-king-of-prussia-imax-and-stadium-16-tickets-15957153275
May 25 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-utah/
May 29 – 3rd Annual Lambda Chi Alumni Clay’s Day – http://akidsbraintumorcure.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=515
May 3 – Race for Hope Washington, DC – http://www.braintumorcommunity.org/site/TR?fr_id=2360&pg=entry
May 30 – Bellingham Brain Cancer Walk – http://braincancerwalk.org/bellingham
It is my hope that these events will inspire you to get involved in awareness events throughout the year – not just in May.
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.
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.
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 .
Tonight I was watching The Voice and listening to these young people talk about pursuing their dreams. It’s a fun show, and I really get inspired listening to them talk about their goals. But today I got to sit in a room and listen to cancer researchers talk about pursuing their dreams. Talk about inspiring!! I wish that each of you could be there and hear what they have to say about their work.
I wish that the world chose to really get their priorities straight. I wish that instead of rock stars, we were watching cancer researchers. I wish that they got the recognition and the “buzz” that celebrities get. I know that this isn’t a switch that is likely to happen anytime soon, but still, I hope that the folks reading this blog will get excited about what I’m going to share.
In today’s meetings, we were asked to help put together a pilot program for the database they want us to build. Using their data and developing computational power, we want to pilot this program that will allow them to share data and work together toward a cure. They have asked us to start with DIPG and GBM – two of the most deadly brain cancers.
These are some of the smartest people I have ever met, and they are asking us for help. To be more clear, they are asking for YOUR help.
They can’t depend on traditional funding sources for this. Grant funding is very limited, and most grants aren’t structured for programs of this scale. The funding sources they have access to traditionally want to see results before they will fund programs.
So they need us – all of us – to help them find this pilot so they can show some results and get further funding. Every one of us has the power to do something big here. Really big. You may think you don’t have much to offer, but you do!
If you have read this message then you have the power to help us meet our goal. Please share this blog. Then think about ways you can make an impact in your community. Can you hold a bake sale? A car wash? A Zumbathon? Whatever it is you like to do, invite some friends to do it with you and raise a few dollars.
If we all do that, we can make thousands of dollars to help these researchers change the way research is done. This is bigger than me. It is bigger than you. It is the sum of all of us, and together we can change the world!
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!
This morning I woke with a start and was completely wide awake. I am not a morning person, so this was very unusual for me. I had been awakened by my dream. In my dream, I was able to think a little more freely about some questions as they relate to cancer research, and I woke up super excited to put those questions down on paper.
The timing is perfect as four board members from Dragon Master Foundation are traveling to Philadelphia this week to meet with the Childhood Brain Tumor Tissue Consortium. This is the second meeting for Richard and I, but the first time we are able to take other board members. It is significant because the progress we can make in person is more collaborative than what we can discover over the phone. Rapport has been built, and I believe both teams are eager to forge a bond that will help us move this big data project forward.
I can’t really share every thing that is going through my mind, but there is a central issue that I think is key for all of us to understand. It starts with Ted Kennedy.
Ted Kennedy was diagnosed with GBM in 2008. He went to the best doctors money could buy, and he died anyway. There is much to be learned about brain cancer. My son, David, was diagnosed in 2010, and he died in 2012. He also had amazing doctors, and unlike Mr. Kennedy, David had great health and youth on his side. It didn’t help. The doctors and researchers didn’t have any new information to work with that might make a difference. There has been little progress in brain cancer research in the last few decades. However, in the last couple of years, scientists have discovered that GBM is not just one disease. There are at least four subtypes. It is easy to understand that these subtypes might all react differently to different treatments. Right?
And now for the really important part. If there are four subtypes of GBM that have just recently been discovered, what other things might we have been missing in the “big picture”? You see, we are in a revolutionary time in both science and technology. And one can barely keep up with the other. Researchers are pushing to the edge of their worlds – eager to go farther, faster. Data engineers are using bigger sets of data in new and innovative ways – eager to go farther, faster. But there are precious few resources being given to bring these two sets of people together. Imagine a researcher writing out all the questions he or she is trying to answer. There may be hundreds of possible scenarios they want to investigate. It would take a whole lab full of people months, or maybe even years, to answer all the questions. They might not ever be able to answer the questions because they simply don’t have access to enough data.
That is where the data engineers come in. They can take the data and program the computer to find similarities and differences, greatly reducing the number of man hours needed to get answers. The questions are hard, but the answers could be easy.
However, before any of that can happen, we have to build the database. The exciting thing for us is that the team at CBTTC has already begun doing that. They have started “small”, with childhood brain tumor patients, but their vision is big. We believe it is going to be able to scale quickly to include adult tumors and then even beyond brain cancer. This is the way research will be done in the future, and we are poised to make it happen now. NOW. And the faster this database is built, the faster they can save lives.
To say we are working with a sense of urgency is an understatement. It woke me up this morning. I think about it every day. I truly believe the only thing standing between us and a cure for cancer is this lack of a database. So we are going to build it, but we truly, desperately need your help.
Everyone can do something, and right now the thing we are going to need most is resources to build the database. We need citizens like you to care about a cure for cancer right now. You need to ask your hospitals if they are sharing data. Don’t accept no for an answer. We need to build this database big enough that they can all share -which is going to take a lot of money. The good news is that the major expense is in building the database. Once the resource is built, ongoing expenses will be a fraction of the start-up costs. So the help we need in the beginning will diminish over time. When the database is fully functional, it will save money elsewhere that could be re-allocated to fund the database.
Please share this story with everyone you know. It is so important that we get this database built. It is too late for my son, but there are so many other lives at stake. We can’t afford to wait for someone else to fix this problem. We have to do it ourselves. Now.
If you’d like to donate to the project, you can make a tax-deductible donation here:
If you would like to plan a fundraiser in your area, please let me know and we can help you get started. We CAN do this!
I’ve been having some wonderful conversations with folks about the foundation recently, and one of them was kind enough to blog about it. Check it out: