Recognition for “Putting Kids First”

We are so proud to share the announcement that the Center for Data Driven Discovery in Biomedicine (D³b) has been selected to lead the NIH’s Kids First Data Resource Center. D³b is based at Children’s Hospital of Philadelphia, and they along with a number of other partners, including Dragon Master Foundation, will be a integral part of the new, collaborative effort funded by the National Institutes of Health Common Fund to discover the causes of pediatric cancer and structural birth defects through the use of big data.  The Center will be known as the “Kids First Pediatric Data Resource Center” (DRC).

This effort goes hand-in-hand with the work we have been doing on Cavatica, and as a liaison to the Children’s Brain Tumor Tissue Consortium’s Scientific Advisory Committee, I will be attending meetings for the next three days related to this and other collaborative efforts to take place in the coming year. We are so excited about the influx of resources from NIH, but  it does not take any of the pressure off of the work we are already funding. This means that the project will grow bigger and faster, but there is much work to be done on our own efforts. For example, the clinical trial that we have committed to fund still needs to be funded.

We want to take this opportunity to recognize all of the hospitals, foundations, individual doctors and researchers, and families who have worked together to get us this far. This really is a massive undertaking that we believe will forever change the way we conduct medical research. Please take a moment to read the full press release here.

 

3 Changes Coming To Clinical Trials

If you have a “rare” cancer that doesn’t have a great standard of care, chances are you will be offered a clinical trial. To the general public (which is who we all are before that diagnosis is presented) clinical trials sound like a scary thing. To a cancer patient being told there is no cure, a clinical trial is a lifeline being tossed in a stormy sea. IF you catch it, it MIGHT help save your life.

So how do you pick a clinical trial? Well, first you have to find one that you qualify for. We’re going to assume that you have a doctor who is really helping you and is presenting you with some choices. So you have a couple of clinical trials and the “standard of care” to choose from. How do you decide? Right now, it’s a guessing game, but all of that will be changing rapidly as technology and open access data become more commonplace in the process.

1. You will have more concrete data to help make decisions. I have seen some pretty impressive technology being developed by Clalit Research Institute in Israel that will help a doctor walk through a list of weighted questions with a patient that will help them make this difficult decision. (That program was developed using data made available from a clinical trial, and as more data becomes open access, I think we can expect to see more applications like this developed.) Each patient will be able to rate a list of possible side effects and based on their feedback, an algorithm will provide guidance on particular trials.
2. You will know more about what “successful” patients look like. As data begins to become collected in one place, it is easier to compare patients on a genomic level. Researchers will be able to compile profiles of successful patients to help determine who has the greatest chance of success on a trial. My son participated in a clinical trial where one patient was doing really well. We had no idea if David would have the same results because there was very little data to tell us why the first patient was successful.
3. The system will start to find you. Right now, clinical trials are found largely by patients and doctors sifting through websites like clinicaltrials.gov to find possible trials. In the future, doctors will enter your information into the computer, and then you will be pre-qualified based on your exact diagnosis and personal information. The computer will then present a list of potential trials that you can choose from.

This all might sound a little too good to be true, but the fact is, the infrastructure is already in place. Cavatica.org is an open access research platform that Dragon Master Foundation and others have been funding for more than three years now. It houses a patient’s full genome and biosamples from the patient, and sometimes the patient’s parents. It also links to the patient’s clinical records so we can have a longitudinal view of that patient. I believe it is the single most complete picture of a patient you can get, and we are working hard to make it available to everyone. (At the moment, it is largely working with pediatric brain cancer data, but the platform is built to expand as funding becomes available.)

Data like this can take a lot of the fear and guessing out of treatment, and it should lead us to more successful treatments and cures. We are on the cusp of a meaningful shift in cancer care, and I’m excited for this to start really impacting patients lives.

One Small Gesture CAN Change the World

Today is the halfway point in the Revlon Love is On Challenge. We have raised over $21,000, which far exceeds any online fundraising we have done for Dragon Master Foundation in the past. It shows that we are growing as a foundation and that people are starting to really understand and support our mission. I really wanted us to be at $50,000 by the end of the day today, though. Hitting $50,000 today would mean that we have a guaranteed pitch meeting with Revlon to promote Cavatica — an open access data platform that will dramatically improve the cancer research process. We have until midnight. I haven’t given up hope.

My heart may be broken, but I don’t want yours to be. 

There are literally thousands of people who have the potential to read this message. If each of them donated only $10, we would far exceed our goal. There are many times in this life that we are helpless. We sit and watch as good people die from a disease that seems unstoppable. I’m here to tell you that it is stoppable. We are seeing breakthroughs with precision medicine efforts, but if we want them for everyone we must take action. Precision medicine initiatives are only as good as the data that drives them. You’ve seen the photos. Right now, a family sits with their child knowing there is nothing else to be done. For those of us who have been there, there is nothing we wouldn’t do to keep you from knowing that pain. Wives continue on without their husbands because a nasty beast stole them away right in their prime. Children grow up without mothers because cancer stole them from their family.

This project has the potential to help all of mankind. I don’t expect you to devote your life to it. I know you have jobs and kids and other responsibilities. All I’m asking is that you realize what an amazing opportunity this could be for all of us, and maybe skip that extra meal out this week. Donate two days worth of Starbucks to our cause — TODAY. I promise you we will make the very most out of that donation.

You can donate here: https://www.crowdrise.com/DragonMasterFoundation-Revlon2016

Brain Cancer Awareness Month Needs You!

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 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:

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.

It’s Kind of a Big Deal

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!