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.

Brain Cancer Awareness Month Needs You!

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DavidWearGray

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!

Anywhere
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 FacebookTwitter, 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:

California
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/

Connecticut
Sharing Hope Walk the Walk Talk the Talk – http://hope.abta.org/site/TR?fr_id=3330&pg=entry

Florida
May 2 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-fl/
May 9 – Prohibition Gala – http://btagala.com/

Georgia
May 5 – 11 Annual JSL Charity Classic – http://www.jslcharityclassic.com/
May 31 – Bowl for the Bull – http://www.gofundme.com/bowlforthebull

Illinois
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/

Iowa
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/

Kansas
May 3 – Avengers Age of Ultron Movie Screening – http://www.dragonmasterfoundation.org/events/

Massachusetts
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/

Michigan
May 2 – BT5K – http://hope.abta.org/site/TR?fr_id=3183&pg=entry

Minnesota
May 17 – MN Brain Tumor 5k – http://mnbraintumor5k.com/

Mississippi
May 2 – North Mississippi Kilt Walk & Fun Run – http://www.kiltedforbraintumors.com/

Nevada
May 16 – Desert Gray Matters – http://wizathon.com/walktoendbraintumors-nv/

New Jersey
May 30 – National Walk to End Brain Tumors – http://www.wizathon.com/walktoendbraintumors-nj

New York
May 17 – 11th Annual Team Billy Ride & Walk for Research – http://www.braintumorcommunity.org/site/PageServer?pagename=BTR_SS_Homepage

North Carolina
May 3 – NC Triangle Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1990&pg=entry#.VUMC6mTBzGc

North Dakota
May 24 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-nd/

Ohio

May 18 & 19 – Joggin for the Noggin Benefit Dinner – https://www.facebook.com/events/350866698444089/

Pennsylvania

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 24 – BRAINFEST – https://secure2.convio.net/abta/site/Donation2;jsessionid=0C748EA3B0B8BED03111BA4D4F56B5A0.app274b?df_id=6720&6720.donation=landing

Utah
May 25 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-utah/

Virginia
May 29 – 3rd Annual Lambda Chi Alumni Clay’s Day – http://akidsbraintumorcure.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=515

Washington DC
May 3 – Race for Hope Washington, DC – http://www.braintumorcommunity.org/site/TR?fr_id=2360&pg=entry

Washington
May 3 – Seattle Brain Cancer Walk – http://www.braincancerwalk.org/
May 16 – BT5K – http://hope.abta.org/site/TR?fr_id=3182&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.

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.

IMG_0012

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 .

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!

Paradigm Shift in Research

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We want to invite you to be part of something exciting in 2014, something that could literally change the world.

In the latter part of 2013, right here in Wichita, the Dragon Master Foundation was formed to vastly improve the way cancer research is conducted. By pulling together resources from hospitals and research organizations who have never before been able to collaborate, we plan to use “big data” to simplify and speed the work of cancer researchers. The scientists we have talked to are excited about the possibilities. One of them told us that this would change the way they do cancer research. Pretty cool, huh?

We really believe that with this database, a researcher will cure cancer. We just need to build the database. That’s where you come in. We will be holding a number of events to bring awareness to the project and raise much needed funding to build the database. Will you please include us in your schedule and budget for 2014? We need community leaders to help us bring this database to fruition and save lives. We need people just like you to understand this project and help us bring it to a national, and eventually international, scale.

If you have some expertise that you think could help us, please get in touch with us. We want to talk to you if you are interested in the project – whether you have technical knowledge or just time to volunteer, we can use your help.

We have two events on the horizon that we can tell you about right now. One is Concert to Cure, which is a fundraiser that started in Wichita, KS. We have people interested in hosting similar events around the U.S. this year, so we are excited that more people might be able to get involved. The second event is Race for Hope in Des Moines, IA. This is a 5K event, also in its second year, that raises money for both the National Brain Tumor Association and Dragon Master Foundation. If you are interested in doing an event in your area, please let us know. We will be announcing other events as the year progresses, so stay tuned!

We are passionate about finding a cure for brain cancer, and we hope that by sharing the #52blog stories, you will come to understand why we feel it is important to start there. Ultimately, we think our database will help all cancer researchers, though, and we live for the day that we can prevent and cure all forms of cancer.

To learn more about what we are doing, please check out our website: http://www.dragonmasterfoundation.org