How weird are you?

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.

Brain Cancer Action Month 2016

I had big plans to be super organized heading into May this year, but for various reasons, it just didn’t happen. So here we are, on May 4th (Star Wars Day!), and I’m just now making a post about all the ways you can get involved this month. There was a big event on May 1st in DC, Race for Hope, so I’m sorry for not getting word out to all of you in time to participate in that. It was only the first of many events this month, though, so without further delay, here are some ways you can get involved:

Wear gray. It’s the most simple way to show your support. Grey is a pretty bland color, though, so to really get people’s attention, you might need to draw some attention to yourself. Maybe some crazy hair, or a Hawaiian shirt on top of your grey… something te get people wondering what’s going on with you. 😉 You can even take a gray selfie and enter to win a prize!

Change your profile picture. Make your profile image go gray this month. Need some inspiration? Check out our Pinterest board.

Support on online fundraiser. Maybe you’re busy. We get that. So skip coffee or drinks for one day and donate that money to an online fundraiser. You can find some worthy places to donate at these links:

Sponsor a runner in California here , here , here or here

Sponsor Runners in Iowa

Sponsor a runner in Kansas here or here

Sponsor a runner in Pennsylvania here

Sponsor a runner in Virginia

Go to an event! This one is a little bit trickier because the events are in specific geographic locations, but if you can make it to one, please do! The folks that organize these events put a lot of hard work into them, and it physical events can be a real boost for survivors. I’m listing the ones I could find by date and then location.

May 14th

4th Annual Race for Hope DSM – Des Moines, IA

San Diego Brain Tumor Walk – The Waterfront Park, San Diego, CA –

May 15th

Comedy Night – Hollywood, CA

12th Annual Team Billy Ride & Walk for Research – Saratoga Springs, NY

Boston Brain Tumor Ride – Waltham, MA

May 21st

CureFest 2016 – Humble, TX

Bay Area Brain Tumor Walk  – Crissy Field, San Francisco, CA

Charleston Brain Tumor Walk – Mount Pleasant, SC

I am sure I’ve missed a lot of events for the month due to lack of research time. Do you have an event or activity to share? Please add it in the comments!

Is Empathy Better than Apathy?

Let me just start this post by saying I just got bad news. I’ve come to know a family very well through their son’s GBM battle, and I just found out they are sending him home on hospice. No more options. He’s just a little boy. His Caring Bridge page has a rocket ship. He likes Legos and Star Wars. And they don’t have any other treatments for him. He is struggling to breathe, as many warriors do, because the tumor is pressing on critical parts of his brain. I’ve sat beside my son’s bed and watched that all happen. I’m horrified that they will have to do the same.

With each new family I meet, I think to myself, “I hope this is the one we save.” And I believe each time that it might be that person. That dad, that daughter. When I express my frustration in the timeline to those around me, they are always quick to say, “but look how far you’ve come!” That may be true, but it isn’t far enough, fast enough. We’ve made amazing headway. But it isn’t saving Jack.

When I post on Facebook or Twitter about these kids, people are quick to offer prayer. They are even quicker to send a birthday card or gift to the sick child. That gives peace for a moment, but I want more. I want the same kind of action and passion toward curing these warriors so that we don’t feel the need to make their birthday special because it is probably their last. Which brings me around to my question. Is empathy better than apathy?  Are we really helping anyone by feeling sorry for them? When you read those stories and posts and think, “oh how sad”, does it incite you to action?

Today I read some of the comments on VP Biden’s Cancer Moonshot post. At that time, there had only been 125 people who had shared their cancer stories. My story is near the top with only 10 likes. Are you kidding me?!? The Vice President of our country is finally making cancer research an issue and only 125 people could be bothered to respond? I get that not everyone likes to write about that stuff, but everyone could go click like on a story that resonates with them. Is cancer research important to you or not?

I’ll be perfectly honest. Six years ago it wasn’t a priority for me. I thought most cancers were curable, and that the ones that weren’t were extremely rare. I was wrong. Cancer is still a devastating disease that takes many forms – quite a few of which are virtually untreatable. Oh, they will do some form of treatment for everyone, but in cases like brain cancer, they know it most likely won’t do much good. May God bless the folks who go through these treatments knowing it may not help them, but it might help someone else down the road. David did that. And that’s why I am so passionate about this. If I had gotten passionate about it 10 years ago, maybe we could have saved him. But I’ll be damned if I sit by and let other people die when I know that science is capable of better treatments, and yes, maybe even cures.

When I was reading those posts, several people asked what they could do. No one had responded to them, so I did. I told them to volunteer with groups who are looking to change the status quo. Post on social media in support of those groups, and financially support them whenever you can. If we want change, we have to make it happen. Today the bad news went to Jack’s family. It could be anyone else tomorrow. Seven more children will be diagnosed tomorrow. Three of them will lose their battles. Every day. To me, that means we have absolutely no time to lose. What does it mean to you?

 

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!

10 Answers from Today’s Living With Brain Tumors Event

I just participated in a great Twitter Chat that was moderated by Dana-Farber and the National Brain Tumor Society. For those of you who don’t do Twitter, I thought I would re-cap the conversation here. The info is all archived on Twitter under the hashtag #DFCIchat. Dr. Reardon was there representing @DanaFarber, and several staff members from @NBTStweets were also online. All the answers noted below are from Dana Farber, unless otherwise noted.

Q1: What are the most common kinds of brain tumors?
A1: Glioblastomas are the most common adult primary cancer of the brain; about 13,000 cases are diagnosed every year in the US.
A1: Other kinds of brain tumors include oligodendrogliomas, astrocytomas, and meningiomas.
A1: Metastatic cancer to the brain or central nervous cancers is 4-5 times more common than primary cancers.

Q2: What are some of symptoms of brain tumors?
A2: Symptoms can include difficulties with balance, strength, coordination, vision & ability to speak. Seizures are also common.
A2: Headaches that are new/worsening. Often worse when lying down & in the morning – they may include nausea or vomiting.

Q3: What are strategies for coping with cognitive brain tumor problems?
A3: Neurocognitive testing is critical and allows identification of areas of strength and weakness.
A3: Potential interventions include medications such as stimulants (ritalin and nuvigil) and memory boosters (aricept)
A3: There are also many great apps to help, such as Lumosity, or formal cognitive rehab therapy
@CBlotner: Other interventions include support groups or programs such as @campdream where survivors can meet peers like them.

Q4: What kind of support is important when someone is living with a brain tumor?
A4: Brain cancer can have such a wide array of impacts on patients and families: physical, cognitive, and emotional.
A4: Patients often have physical difficulties and may need help with strength, balance, and coordination.
A4: Patients may experience changes in personality and behavior, so support and education is also important for caregivers.
@askdebra: There is an incredible #braintumor socmedia community hashtag: #btsm. 1st Sun of month 10-11pm ET is #btsm twitter chat

Q5: What role does nutrition play in managing brain tumors?
A5: Good nutrition is critical for the immune system and overall health.
A5: A healthy, balanced diet can help patients get through treatment with fewer side effects.
A5: A trained nutritionist should be a key member of your care team as a brain tumor patient.

Q6: What role does social media play for the brain tumor community?
A6: Social media can bring together clinicians, patients, and advocates who are passionate about curing brain tumors.
A6: A brain tumor diagnosis is difficult to cope with. Connecting w/ other patients through social media can be invaluable.
A6: Great info is available online, but some is misleading or wrong. Be cautious and discuss any questions with your care team.
@amandahaddock: In a community defined as “small”, social media connects those effected and helps them feel less isolated.
@BrainTumourOrg: We have a Facebook group for anyone affected. People use it to share their stories, news, tips. It’s a real community.
@Cangela25: @Livestrong does free programs for Cancer Survivors at YMCAs
@amandahaddock: Facebook groups to check out: Glioblastoma Cancer/Brain Trauma Caregivers; Brain Tumor Talk, Brain Cancer Family

Q7: What role does exercise play in managing brain tumors?
A7: There is some evidence that exercise may improve symptoms and possibly impact progression and survival.
A7: Exercise can combat fatigue, improve bone health, and reduce anxiety.
A7: Exercise keeps the immune system strong and can reduce risk of complications.

Q8: How do clinical trials contribute to brain tumor advances?
A8: Clinical trials are essential to improve brain tumor treatment and include a wide variety of therapeutic approaches.
A8: At Dana-Farber we test patients’ tumor samples to recommend specific clinical trials that offer the most promise and hope.
A8: Clinical trials are essential to improve brain tumor treatment and include a wide variety of therapeutic approaches.
A8: We are developing a variety of strategies to stimulate the immune system to recognize & attack tumors.
@NBTStweets: You can search for brain tumor Clinical Trials at clinicaltrials.gov
@TheLizArmy: I would love to see a SURVIVORSHIP PLAN for brain tumor patients/survivors. These are developed for other cancers.

Q9: How can caregivers of patients with brain tumors find support?
A9: A brain tumor diagnosis can cause huge emotional & financial disruptions for families. Support for caregivers is critical.
A9: Finding support groups (online or in person) can be key to coping for caregivers.
@AmandaHaddock: There are people all over social media to connect with. Active users on Facebook, Twitter, Instagram, and Pinterest
@TheLizArmy: Caregiver.com (@todayscaregiver) has a ton of amazing resources and articles; Caregiver.com also features articles w/”famous” caregivers which is pretty inspiring

Q10: What resources would you like to share?
A10: On September 20th we’ll be hosting an annual Living with Brain Tumors event at Dana-Farber: bit.ly/N2A9o6
A10: At Dana-Farber we offer a number of clinical trials for brain tumor patients: bit.ly/UzudHo
@AmandaHaddock: facebook.com/OperationABC will post about any event nationwide that is raising awareness or funds for brain cancer research
@AmandaHaddock: @dragonmasterfdn keeps a list of any organization that has direct patient/caregiver benefits. dragonmasterfoundation.org/resources/
@BrainTumourOrg: For everyone from the UK – support groups regularly all over the country #DFCIchat: bit.ly/1rTEbBY
@NBTStweets: Download Frankly Speaking About Cancer: Brain Tumors for information on living with brain tumors #DFCIchat
@TheLizArmy: The #BTSM community hosts tweet chat every 1st Sunday for anyone impacted by brain tumors pic.twitter.com/P7f2SJ5AOV
@AmandaHaddock: NBTS has an advocacy day every May in DC. Awesome opportunity to meet survivors and let your voice be heard at the Capitol.

I didn’t try to re-create the whole conversation for you, but you can get a pretty good idea of how it went. Overall, it seemed very successful. I hope that there are a lot of people that can benefit from this information.

Living with Brain Tumors

As a lot of you know, I volunteer actively in the brain tumor community.  I serve as the Kansas Lead Advocate for the National Brain Tumor Society, and I am President of the Dragon Master Foundation. Both are very rewarding roles, and through them, I meet interesting people in the war on cancer. Through one of those connections, I’ve been asked to participate in a Twitter chat this week.

I’m very excited about this chat for a few reasons:

1) It is so hard for the newly-diagnosed to know where to turn for information. This chat will be an excellent resource for them. Topics to be covered will include symptoms, treatment, exercise, nutrition, and research breakthroughs.

2) We will have some direct interaction with David Reardon, MD, Dana-Farber’s clinical director of the Center for Neuro-Oncology. He is very well-respected in the field, and I am honored to be chosen to participate in something he is involved with.

3) Hosting the chat on Twitter means that people all over the world will have access to the information. It is an exciting time to be involved in advocacy and education movements, and I think cooperative efforts like this will be a big benefit to patients, caregivers, and medical professionals.

If you aren’t on Twitter yet, now is the time to join! If you have questions you’d like to ask during the chat, simply tweet them to @DanaFarber. Follow the conversation on Twitter through the hashtag #DFCIchat.

What Are You Doing To Cure Cancer? You May Be Surprised At How Much Power You Have In This Battle.

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:
http://www.dragonmasterfoundation.org/get-involved/

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!

52 People You Need To Meet: #22 Richard Haddock

David Pearson is my stepson, who I immediately liked when we first met. He was a very odd kid and loved to be different. Whenever someone told him that he was weird, he would simply smile and say “thank you”. David never cared what anyone thought about him and was always befriending the friendless. He would almost seek out the ones who looked wounded, or in need of a smile, or a joke, or to say something totally unexpected. David treated everyone like his best friend, and they all loved him for it.

David was a stranger to no one, and he is an amazing, wonderful soul. David Pearson was diagnosed with brain cancer, at only 16. This is what I wish I knew before then. Growing up, my parents, especially my mom, taught me that I could be anything, do anything. When David was diagnosed with a GBM (glioblastoma multiforme), my thought was that everything was solvable, that any issue could be analyzed, understood, and fixed, but I was wrong. There is currently no cure for GBM, and the standard of care hasn’t changed much in 30 years.

When we went to the hospital to help David and figure out what to do, we saw that there were lots of children with cancer. One that particularly stood out was a young man named Justin, who had leukemia. His mom, Kathleen was a nurse, and she seemed to know her way around the hospital. She was very kind to us and immediately took an interest in David. Justin and David became hospital buddies and in the short time they were together, became friends. I assumed that Justin would be fine, and that eventually he would be a healthy young man, able to live his life. I naively wished that David had something “curable” like Leukemia.

We weren’t sure what to do, since David was living in Virginia, and we lived in Kansas, but our friends, Jamie and Jennifer offered to let us stay in their house in Virginia while David was going through treatments. We essentially moved into their home, even bringing our dog, Cooper, to stay with them. They were awesome hosts and we could not have done it without them. They continue to help us as well as others.

We weren’t sure what to do with our cats, still in Kansas, and how to look after our home, but our neighbors, Jay and Michelle quickly offered to help with feeding the cats and watching over the house. It was one more thing that just got handled and we didn’t have to worry about. As we worked to help David with his health, we found that there were times that we simply could not get everything done, and that’s when Jay and Teresa stepped in and helped with all sorts of projects. There are so many kids and parents who did little things to help us along the way! Please forgive me for not naming everyone here.

A few months after David’s diagnosis, we got word that Justin had lost his battle with leukemia, and we were stunned. I thought that Justin would be okay,  but the battle had just become too much, and he lost the fight. We went to Justin’s visitation and waited for two hours to pay our respects. When we finally made it to Kathleen, she asked about David. I was heartbroken and amidst her pain, Kathleen was asking about David. Kathleen has been an amazing friend, who continues to fight for cancer research and is a treasured friend.

As we continued working to find a cure for David, we came into contact with many amazing nurses, doctors, researchers and others who are doing their best to make things better for families going through this. Dr. Hwang and Dr. Packer of Children’s Hospital in DC were very vigilant to do everything they could to help us. They were also instrumental in finding a clinical trial for David at Children’s Hospital of Pittsburgh.

Dr. Jakacki treated David in Pittsburgh with a new immunology study that helped him for 10 months until the cancer got smarter and the cancer began to grow. All through our journey, we had the help from many friends, who did things to help that we could never repay. Whatever we needed, friends, and people we didn’t know were our friends yet, helped us in ways that were simply amazing.

David lost his battle at the young age of 18. I think of David every day, and think of what might have been. I miss his sense of humor, his amazing personality, his love of everyone, and his amazing faith. On the day of David’s funeral, a lot of our friends came to pay their respects. I’ve never been one who goes to funerals because they’re uncomfortable. Many people came to show their love of David, including a bunch of his friends from high school. They all wore Hawaiian shirts because David always liked to wear them to be different and stand out.

I was not prepared to see my friends David and Loren show up, as well as Dr. Hwang among many others. My brother, David, also made a point to come and be there for us. It was a very humbling day, and changed my view of funerals. When David’s battle started, I thought that we would be able to fix him, to make the cancer go away. My parents taught me that anything was possible, and even though I’d had various setbacks in my life, I always came through it.

David’s journey, though, was different. Here was this battle with cancer that David lost, but is that it? Is that where it stops? Amanda and I decided that even though David’s battle was over here on earth, that there were many more children and adults who are fighting this battle every day. Many were winning, but too many are losing. After a year or so of thinking about what to do, and trying to “recover” from such a loss, we made a decision to help. The battle for David may be lost, but the war against cancer is certainly not over.

We formed the Dragon Master Foundation in 2013 to bring big data technology to medical research. When we started, we had no idea how many people would offer to help, even though they had no family members who had ever taken on the cancer battle. We’ve been very humbled by all the help from many different people, including Angie, Miles, Kimberly, Roger, David, Linda, Jolee and many others.

I often ask myself what it means to be a Christian, and I think that our friends and family have shown me in many ways what that means. As we struggled with what to do throughout this ordeal, and ultimately our loss, Amanda and I would pray together, and we would feel a sense of calm that I cannot explain nor will I try. Things just happened for us that we can’t explain, I think, because we were connected to something greater than ourselves.

Some days I see David’s picture and just smile. He always made me laugh, and I think of what a privilege it was to have known him and be part of his journey. The picture of David with this article is just a few weeks before his diagnosis. You can see that David was a handsome young man, full of life and laughter and love and promise.

People have told me that it gets easier over time, but it really doesn’t. It makes me sad to think of what might have been. That full life that David had envisioned is gone, and his absence is felt every day. It doesn’t get easier, you just learn to live with it.

Our friends did amazing stuff for us. From all over the country, we have friends who have done so much for us we could never repay them. Even now, we have new friends who have come into our life after David died, and really want to help us with our foundation.

Some days I wonder why they help us so much, but I’m trying to be gracious and just say thank you without question. It hasn’t been easy, but our friends have made it easier for us. I wish I’d known how to be the kind of friend that all of the people who helped us through this journey have been. They figured out what we needed, and then just did it – they didn’t say to call if we needed anything. Friends show up when you’re in need – especially at the funerals of loved ones. I wish I’d known how to be a better friend.

We’re all on a journey that we don’t know the script to, and some days we’re just trying to get through the day. Be gentle, be kind and take care of each other. Life isn’t easy, but with the help of friends and family it’s well worth the ride. Thank you is not enough – but thank you to all the friends who have helped us and continue to help in this journey.

Editor’s note: You can keep track of Dragon Master Foundation at the website: http://www.dragonmasterfoundation.org , on the Facebook page, or on Twitter @DragonMasterFdn .

Here’s What’s Happening In Your Neck of the Woods

May is here!! I know a lot of you would like to get involved in an event, but it is hard to know where events are being held. Last year, we had a pretty decent list on the Operation:ABC “Annihilate Brain Cancer” Facebook page, but this year, I haven’t had the time to update there. It is quite a bit faster to make a list on the blog, so I’m going to list stuff here. These are just May events, listed by state. Please share with your family and friends in these areas so they can help spread awareness, too! If you know of an event that I missed, please feel free to list it in the comments.

California

Brain Cancer Movie – Studio City, CA, All May – Help fund a movie about brain cancer. Make a donation here: http://www.gofundme.com/aimoore

4th Annual (Aloha themed) Party with a Purpose – Huntington Beach, CA, May 2nd – Buy tickets in advance: http:///www.eventbrite.com/e/mcfs-4th-annual-party-with-a-purpose-aloha-friday-tickets-10579157545

Bay Area Brain Tumor Walk – San Francisco, CA, May 3rd – For more info, visit: http://events.braintumor.org/bay-area-brain-tumor-walk/

Connecticut

Purchase an awareness t-shirt to support the Connecticut Brain Tumor Alliance at this link: https://www.booster.com/mariagoesgray

Illinois

2nd Annual Run/Walk – Lincoln Park, Chicago, IL, May 4th – Full details here: http://www.voicesinmotion.org/site/TR?fr_id=1191&pg=entry

Boxing and Beer for Brains! – Northbrook, IL, May 16th – Get details here: http://www.braintumor.org/join-the-fight/find-start-an-event/events/boxing-and-beer-for-brains.html

2014 Chicago Half Marathon & 10k benefitting Northwestern Brain Tumor Institute –  Chicago, IL, May 18th – Register to run for NWBTI here: http://nmh.convio.net/site/TR?fr_id=1210&pg=entry

Iowa

Race for Hope – Des Moines, IA, May 10th – Find out more here: http://www.raceforhopedsm.org/

Head for the Cure – Des Moines, IA, May 18th – Get details here: http://www.headforthecure.org/des-moines-ia/hftc-des-moines

Kansas

Gamesgiving – Wichita, KS, All May – Mention Dragon Master Foundation when you pay for Mobile GameDen services (GameDen, laser tag, archery tag, & human hamster balls) and 50% of the proceeds will go directly to the Dragon Master Foundation. Certificates are good for an entire year. For booking details, go to http://www.mobilegameden.com

Massachusetts

Make a Blast Against Brain Cancer – Charlestown, MA, May 17th – Buy tickets here: http://www.makeablast.com/EVENT_INFO.html

New York

Irwin Berson Art Exhibit – East Meadow, NY, May 4th – Get info here: http://www.braintumor.org/join-the-fight/find-start-an-event/events/irwin-berson-art-exib.html

Texas

Head for the Cure – Plano, TX, May 10th – Find Info here: http://www.headforthecure.org/north-texas/hftc-north-texas

Washington

Pedal It Forward 1st Annual Bike Ride for Brain Cancer Research – Seattle, WA, May 3rd – Registration info can be found here: https://kathigf.ejoinme.org/?tabid=520387

Washington, DC

17th Annual Race for Hope – DC on Sunday, May 4th – For more information, please visit: www.curebraintumors.org.

Wyoming

Dinner/Show benefitting the Olivia Caldwell Foundation – Cheyenne, WY, May 16th – More details can be found here: http://www.oliviacaldwellfoundation.org/#!upcoming-fundraisers/c48r