What is Your Field of Dreams?

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Field of DreamsIt occurred to me today that I don’t really get to talk to our supporters enough. Working on Dragon Master Foundation has turned into a full-time volunteer job for me, and most of the time, my head is down on one project or another. The work doesn’t stop coming, but I am so thankful to be in this position – doing this on behalf of cancer warriors. I wanted to stop for just a moment today, and let you know what your support has made possible this week. (And yes, it is only Tuesday!)

You helped give encouragement to a researcher who has developed a program around brain tumor tissue donation. We will be sharing a lot of his work over the next few months, but sometimes, they just need to hear that their work matters. As he told me about the extremely sacrificial gift he works with in his lab, I could hear the emotion in his voice. Tears gathered in my own eyes as I thought about the sacrifice our family has made, and I hope you all know that giving families this final way to make a difference is a truly valuable gift.

You helped gather feedback on the recently launched research platform, Cavatica, from a man who has dedicated most of his nearly 70 years on this planet to cancer research. He spoke with wonder in his voice of the things he is able to accomplish with this technology – things he never thought possible!

You helped give hope to a group of innovators who are developing a big data algorithm that can make treatment recommendations based on a patient’s DNA. They had been struggling to find the amount of data needed to test their theories, and now they have a source for their work.

These were conversations filled with hope, and that is what we are funding. When we started Dragon Master Foundation, it was because we had some audacious ideas about how to help researchers. Less than four years in, we have accomplished so many of the goals we set out to achieve. There is a real-time, open access platform where hospitals can share genomic and patient data. As I type, there are more than 15 hospitals sharing that data with agreed upon data standards. That alone is more than most people thought would be possible. Like the movie Field of Dreams, this is a real life “if you build it they will come” situation.

Which leads me to the best kind of problem to have. We can’t seem to fund the progress fast enough. We have delivered a tool to the nation’s top doctors who are eager to use it, but we need to fund the data to go inside. Putting the data into Cavatica means truly empowering precision medicine. It means we will be on our way to saving lives. If you’ve ever faced cancer, for yourself or a loved one, then you know that today matters.

There’s another great quote in Field of Dreams that applies to this situation. Archie Graham says, “We just don’t recognize life’s most significant moments while they’re happening. Back then I thought, “Well, there’ll be other days”. I didn’t realize that that was the only day.” It’s easy to let days slip by without taking action, but one day, there won’t be any more chances. We have to seize the opportunity now! Not because there won’t still be data to add tomorrow, but because there are lives being lost today. Every day is life or death to someone. So let’s work with urgency now to save more lives tomorrow.

 

Who’s Really the Enemy Here?

David's Journey, Dragon Master Foundation, Uncategorized

hawking

When someone you love is diagnosed with a terminal illness, the gut reaction is to attack that disease. That’s certainly how we felt when David was diagnosed, and our initial efforts were focused on ending Glioblastoma (GBM) because that was the type of tumor David had. We were not involved in the world of research, and that seemed the most logical  course of action to us. To strike back at the thing that struck at us.

We thought we knew how to help. As we learned more, we realized that we needed to help find cures for brain cancer as a group of cancers because there is a lot that can be learned by studying them together. We also felt like we needed to help that community as a whole because they are so underserved. A broader goal brought us into contact with many more researchers, and many more ideas.

We were energized by some of the sharpest minds in research, and realized that the kind of analytics we wanted to do are really best empowered by studying all types of cancer, and even other diseases, in tandem. The most cutting-edge research points to cancer being mutations in genes and studying the mutations, regardless of the starting point in the body, is leading to new research pathways.
Cancer is a disease that has plagued humanity for generations. In all that time, we have mostly dealt with it as a disease of a particular body part. We now know that it is much more complicated than that, and we need to empower researchers to follow many pathways.
David had a bright and curious mind. For him, helping researchers was never really about helping himself. It was always about helping other people and solving the puzzle of cancer. Brain cancer is the beast that took David from us, and we would love to see that disease wiped out for good. But what if the answer to curing brain cancer lies in pancreatic cancer research? What if the answers we seek lie in the cure for  fibrodysplasia ossificans progressive? (That’s a super interesting rare disease that has been connected to the brain cancer DIPG. You can learn more about that here.)
It’s human nature to strike back at the thing that hits you. But do we really even know what that thing is? Dragon Master Foundation is focused on putting all of a patient’s information into one giant research platform. It’s a database, yes, but it is also a place where researchers can collaborate and gain access to biosamples. It has a patient’s full genomic data, but it also has their treatment path over time. It gives us a more complete picture of what is going on with the patient and what treatments are successful. It can help us understand why certain patients do well on a clinical trial and some don’t. And possibly most important, it looks at patients across many disease types to compare and contrast things like gene mutations. Instead of having one small group of researchers working on a problem, this platform makes it possible for any researcher, anywhere on the planet, to work on high quality data to help find cures.
Tomorrow is #GivingTuesday. It’s a time when people around the world put a few of their hard-earned dollars into the hands of a charity that they hope can change the world. I’m convinced that Dragon Master Foundation is one of the most deserving places you could make your donation. Here are a few of the reasons why:
  • No one at Dragon Master Foundation gets paid.
  • We direct all of our research dollars directly into this one project that is already speeding research. (One doctor said that it shaved a month and a half off of his typical tissue request workflow!)
  • This project has the potential to help patients with cancer as well as a host of other medical conditions.
  • Through this portal, research can be done on both adult and pediatric populations.
  • It was listed as part of Vice President Biden’s Cancer Moonshot Fact Sheet.
  • It is open access – meaning researchers don’t have to be part of a special consortium to access the data.
  • It is cloud based – meaning the researchers don’t have to download petabytes of data that can take days to acquire. It also means they are not dependent on their hospital’s computational power because they can do their work directly in the web.
Dragon Master Foundation isn’t the only foundation funding this. As of right now, there are 13 hospitals and more than twice as many foundations putting resources toward this project. However, many of them have a specific disease focus where they direct their resources. By donating through Dragon Master Foundation, you can be assured that your donation will go to building the infrastructure that will help all patients, all researchers. This isn’t just a gift to help researchers. This is a gift for mankind. This #GivingTuesday, you can  be part of the generation that changes the world.

What A Rollercoaster!

Dragon Master Foundation

Like a rollercoaster as the last car eases over the top of the hill, we are hurtling forward after what felt like slow movement. The projects that we have been working on for the last three years are picking up speed. We have said all along that the way to change cancer research is through greater collaboration, and that message was loud and clear at this month’s Cancer Moonshot Summit at Howard University. There was an extremely diverse group of cancer research advocates brought together to hear Vice President Biden’s ideas and then work together to share our own ideas for how to bring about 10 years worth of change in the next five years. I think that idea might have scared some people, but we have already seen amazing advances using the Cavatica platform, so we know that kind of rapid improvement is possible. 

I know that there were many events held around the country, and we even hosted an event at WSU in Wichita, but many of you may not have had a chance to really see what happened during the day of the Summit. I wanted to give you my perspective on the day, and I hope it fills you with the kind of hope I have for the future of cancer and disease research. 

We started the morning with American icon Carol Burnett. She was delightful, as always, and the fact that she took the time to be there with us spoke volumes about how amazing this effort really is. Vice President Biden shared some of his frustration with us over costs and lack of progress, and we learned about some of the goals of the Cancer Moonshot initiative from Dr. Danielle Carnival, Chief of Staff and Senior Policy Director of the Cancer Moonshot Task Force. 

There were several other speakers, all of whom underscored the need for this important gathering and continuing effort by the community. We broke into work sessions for the morning, and I was placed in the “Solving the Technical Challenges to Unleash the Power of Data” group. That was no big surprise! 

I was incredibly humbled by the people in my workgroup. From industry veterans who have been working on making genomic data available like Warren Kibbe to bright, young innovators like Daniel Wagner who are challenging the way we look at and access the data. It was a fast-paced discussion that resulted in some great ideas.

We all returned to the general session for lunch where we could share ideas in a less-formatted way. I had the great pleasure of sitting with Dr. Charles Powell from the Icahn School of Medicine at Mount Sinai. Our discussions covered everything from rare forms of Mesothelioma to the latest imaging technologies. There’s nothing quite like watching a doctor get a look at new technology that will help him do his job more effectively, and I had the pleasure of watching that at lunch. It is simply amazing what we are gaining access to through new technologies. We got a great look at how Siemen’s is turning analog scans into digital data that can be used for comparative analytics. That will be great in Cavatica!

After lunch, we heard some great speakers who spoke about collaboration. I think some of these were available on the live broadcasts, and they are available for viewing here:

Then we were off to our afternoon workgroup sessions. My session was on “Data: To What End?” and our insightful speaker to start the session was none other than David Agus. 

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We talked about existing collaborations, and I finally had a chance to mention Cavatica, the sharing platform we have been funding. The attendees seemed a little stunned that we already have 10 hospitals not only sharing digital data, but biosamples as well. There was still some sentiment among event attendees that it would be hard to get scientists to share their pre-publication data, but the doctors at the 10 Cavatica institutions are truly putting children, and indeed all humans, first. This level of collaboration may be unprecedented, but it is the wave of the future and that was evident from the number of people looking to learn more about our platform. I was so honored to be able to share about the many hospitals and nonprofits who have come together to build this amazing resource. I believe it could be the model by which all future research is done. 

After a pretty exhilarating working group, we returned to the main hall to hear Greg Simon, Executive Director of the Cancer Moonshot. Dr. Adam Resnick and I got to speak with him for a few minutes after the event was over, and I felt like he was truly trying to pull together all the resources he can to make the end of cancer a reality in our lifetime. 

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The event ended with Dr. Biden and the VP Biden speaking to the crowd and asking for a prolonged commitment to working together for cures. I believe we have that commitment from everyone that attended this important event. 

We returned home to find out that we have been accepted into the Revlon “Love Is On” Challenge. This is an amazing opportunity, not only to raise much needed funding for the research platform, but also to raise awareness for the platform and explain how it can improve research around the world. You’ll be hearing a lot from us about this, but there are two things you can do right now to make a huge difference:

  1. Sign up for our Thunderclap to announce the contest. We’ve used this before, and it is quick and easy. You give one-time permission to Thunderclap to send out a message on our behalf. The message will ask people to support Dragon Master Foundation in the “Love Is On” Challenge. Sign up here: http://thndr.me/ukBgiJ
  2. Sign up as a fundraiser for the “Love Is On” Challenge. This will give you a fundraising page of your own, which will allow you to easily share the challenge with your friends and family. We are asking that everyone make a minimum $10 donation because that is what is needed to count for the contest. Those $10 donations could easily be turned into ONE MILLION DOLLARS if we win the contest. We’ve won social media contests like this before, so we know with your help we can do it again.

 

Turn $1 into $5,000!

Dragon Master Foundation

Missing Piece HeartWe stumbled across another online competition. This one is for $5,000, but it ends on Sunday! Since Sunday is Valentine’s Day, this seems like the perfect chance to share your love with someone in a very meaningful way.

The app is free, but it is only for iPhone users running OS 8.1. That limits the pool of potential helpers a little bit, so we are depending on all of you to help us spread the word. The app is pretty straight forward, but I’ve had several people ask questions, so here’s a quick walk-through:
SmallTokenhomescreen
1. They download the Small Token app.
2. Launch the app & click “Give A Gift”

 

 

 

 

 
3. Enter the email address of the person they want to honorSmallTokenDonatescreen.
4. Choose Dragon Master Foundation as the nonprofit (Type in “Dragon Master” and you get it)
5. Enter an amount. $1 is fine!!
6. Schedule the delivery – anytime between now and any future date.
7. Enter a personal message. It can be a thank you, a Valentine wish – anything!
8. Hit “preview”
9. You will see an orange screen with a heart. At the bottom, you can hit “edit look” to change the color and the icon. Pick what you like, then hit done.
10. Hit “continue” & you will be directed to Give Lively where you can enter your payment information. After you enter your info, click the donate button.
11. You will get a Thank You message, and you are all done!!

I know that looks like a lot of steps, but really it is pretty simple.

Please go enter a donation today and actively encourage others to do the same. We just started last night, and we’ve gotten over $100 in donations already, so it is worth a few minutes of your time.

If you would like to help spread the word on social media,  here are some possible tweets:
Pls download @SmallTokenApp and send a greeting to help @DragonMasterFdn win $5,000. #charity with the highest # of donors wins.

Thank someone today by donating to @DragonMasterFdn in their name w/@SmallTokenApp. You could help us win $5,000! #endcancer

Help win $5k for #research 7& give a #cancer warrior a smile by donating to @dragonmasterfdn & sending a greeting through @smalltokenapp!

 

Thanks & have a Happy Valentine’s Day!

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.

52 People You Need To Meet: #4 Angela Heckard

52 People To Meet Posts

What I Wish I Knew Before my Husband was Diagnosed With Brain Cancer.

January 5, 2011 my husband, Todd, was diagnosed with Grade III Anaplastic Astrocytoma of the Left Temporal Lobe.  He had suffered a seizure exactly one month prior, just before leaving the house to watch Sunday football with the guys.  My husband passed away on August 12, 2012, shortly after turning 47, always believing that he would beat this monster, always having hope.

His face cradled in my hands as he took his last breath… a moment, a sight, a sound, the most devastating pain that I will forever carry with me.  Those are things that I can never escape as his final breaths often invade my thoughts without warning, without mercy, and very often publicly, leaving me to seem an unstable woman, tears streaming, as my brain favors the rewind button.

I miss my husband more than I can ever explain to anyone, whether they knew us or not. Todd was my husband, my lover, my personal comedian and singer, my best friend and sometimes worst enemy.  The following are some of the things that I wish I knew before Brain Cancer devastated our lives.

I wish I knew, truly knew, to the extent that I do now, how lucky I am for those that I have in my life.  My friends are not merely friends, but family, maybe not by blood but my family nonetheless.  They have supported me, stood by me, and helped me in ways and times when I didn’t think I could be helped.  Some sat with my husband while I grocery shopped, many had provided food and cooked meals, when eating was the last thing on my mind.  Some were there for moral support, to take a breather, to laugh with their silly antics or have a glass of wine, sometimes bottle, late at night when the house was quiet.  And then there were some who at the most critical of times, never left my side.  Drove me to finalize arrangements and choose the options they knew we wanted, even though I could not verbalize them myself.  The one who dressed me, fixed my hair and makeup and found the things that I would constantly misplace, except for that key.  Only Todd knows where the key is hiding.  And then too, the Warrior Women, that wonderful group of ladies, that embrace and support those of us affected.   The love and support of my friends, to this day, continues to humble me to my very being.  I will be there for them as they have been for me, although I pray for them that it is never needed.

I wish I knew the phrase “Let me know if you ever need anything” is such a cop out.  Until this beast affected my family I may have used those words.  Now I know better.  Now I know that I need to look at the individual, take in their struggles, access the situation and jump right in and provide what is needed.  What I know is that those of us struggling will never ask for help, we will keep struggling, keep fighting, against better judgment, because maybe, just maybe, asking means giving in, giving up.

I wish I had known that the phrase “God will never give you more than you can handle” is something that someone made up along the way to comfort those experiencing the harsh realities of life.  You will be given more than you can handle, some more than others.  Try to overcome the desire to slap this person.  They mean well and to their credit, may have never experienced what we have. Those of us left behind.  The wives and husbands, mothers and fathers, sisters and brothers, nieces and nephews and friends, we understand that we will constantly be challenged.

I wish I knew that all of these years together we were not living life, we were merely existing, going about our days as we had each day before.  One night we sat talking, Todd and I, and he discussed all that he wished he had done differently, and the choices he made that he would have changed.  Less time working after work, more vacations as a family and less side jobs done while on “vacation”.  He would have spent more time with me instead of the guys, he would have spent more time with our son instead of beers with friends, had he known what beast was within.  I came to realize that we went through the motions of every day as we had the day before, the mapped out course of our lives, I have forced myself to step outside of my comfort zone, that safe refuge that I had resided all these years.  Maybe it is only in baby steps but I’m doing it, one step at a time.  Fear of heights put aside, I went zip-lining.  And there were butterflies; butterflies were everywhere, just like the day we laid him to rest.  I learned to ride a motorcycle.  Just before taking my test I was nearly in a panic because I hadn’t had that confirmation, it appeared: my butterfly.  I think he is showing his support and smiling down on me for these tentative steps.

I wish I had known that brain tumors are so devastatingly deceiving and that the decline can happen so quickly. Often those with brain cancer do not appear unhealthy.  I didn’t know I would hear “I didn’t know he was so sick.”  I also didn’t know that last week, those final days, I would have to say goodbye.  Two weeks before. Three weeks before. Yes, there was decline, but I didn’t know.  I didn’t know that my love would be gone in a blink of an eye.  I wish I knew that my thoughts would flood, often without warning, of all our years together.  I wish I knew that I would break down in public because of a song that is playing.

I wish I knew that I am a warrior, not Xena, just a warrior.  That I actively engaged in war, on my home-front.  A war that I had never imagined that that I would have to fight, nor was strong enough to endure.  I promised Todd that fateful day in January of 2011 that I would slay dragons for him if I had to, and in his memory I will continue to fight. I fight in the memory of my Hero Angel.

Today is #GivingTuesday!

Uncategorized

I’m a child of the 80’s, and I grew up with songs like “We Are The World”. I took that message to heart. It was written for the people starving in Africa, but it applies so well to the situation we are facing with brain cancer. Here are the lyrics:

“There comes a time when we heed a certain call
When the world must come together as one
There are people dying
And its time to lend a hand to life
The greatest gift of all

We can’t go on pretending day by day
That someone, will soon make a change
We are all a part of Gods great big family
And the truth, you know,
Love is all we need

[Chorus]
We are the world, we are the children
We are the ones who make a brighter day
So lets start giving
There’s a choice we’re making
We’re saving our own lives
Its true we’ll make a better day
Just you and me

Send them your heart so they’ll know that someone cares
And their lives will be stronger and free
As God has shown us by turning stones to bread
So we all must lend a helping hand

[Chorus]

When you’re down and out, there seems no hope at all
But if you just believe there’s no way we can fall well well well well
Let us realize that a change can only come When we stand together as one”

If you want a flashback, check out the video: https://www.youtube.com/watch?v=M9BNoNFKCBI  I love that it starts off with fellow Alabamian, Lionel Ritchie! Then goes on to include literally the biggest stars at the time, including one of my teenage obsessions, Billy Joel. Seriously. It’s phenomenal even today. Stevie Wonder, Springsteen, Willie Nelson, Quincy Jones, Cyndi Lauper, Ray Charles… I could go on, but you get the idea.

It’s exciting to me that social media is coming together to draw attention to a worthy cause like giving back to your community. There are so many ways to give back, but the two most obvious are volunteering and donating. We would love it if you would join our fight against brain cancer, but if not our cause, please find some way to make a difference. The world CAN be a better place, but we must all live with the intention of making it so.

On our website, http://www.dragonmasterfoundation.org, we have a list of resources that help families and patients who are fighting brain cancer. They are listed by state, so you can find one near you (hopefully).  We would also love to help you plan an event in your city to raise awareness and money for brain cancer research. Or if you really want something simple, you can make a tax-deductible donation here: http://www.wichitacf.org/donate/dragon-master.php

Whether it is our foundation or some other group, we’d love to hear what you are doing for #GivingTuesday. Drop us a note here or on Facebook or Twitter.

It’s A Revolution, I Suppose

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This past weekend I had the opportunity to meet some women I had previously only known through Facebook. We traveled two and a half hours to meet with about 30 ladies who have all been caregivers to a loved one with brain cancer. It was cathartic, energizing, sad and joyous. They are amazing people.

As I was talking to them, I realized that though we talk a lot on Facebook, they didn’t really know what the Dragon Master Foundation is or what we hope to accomplish. They asked, and I told them my vision for the foundation. They all seemed excited and supportive. They told me their stories – some of which made me downright angry.

I can’t share the stories they shared with me. Those are for them to tell, but I can tell you what I told them.

We started Dragon Master Foundation because of one main incident. We heard Dr. Anna Barker speak last October, and she brought up and quickly dismissed her dream to have thousands of genomes in a database where she could compare the data. It’s a ridiculously large dream for “mere mortals”, but that type of technology is already in use by big business and governments. It’s how the NSA tracks all the phone calls and emails they collect. It’s how Google knows what you bought online and how it suggests other products. It exists. It is not being made accessible to these researchers. Why? Well, it is expensive, for starters. A database the size and scope of what they need will cost millions of dollars. And that is just to build the empty database! Collecting the data that they need to go into the database could potentially cost even more… unless…

What if we could find a way for the existing institutions to work together? What if we could compile all the data they have, make it easier for them to access and study, and then also give them access to thousands of other records? So researchers would go from looking at 50-100 records to looking at several thousand. Patterns would be easier to spot.

The technology exists to do that, but the project is so large that no one has had the funding to use it. That’s where we come in. Dragon Master Foundation is going to build a database that will be accessible to member institutions to use. It will have genome data, but it will also be able to house clinical data, and environmental data.

Precious little is known about what might cause brain cancer. The few available drugs work for some people, some of the time. We need more information available to the researches so they can begin to understand why that is the case. Patients and caregivers frequently credit diet, exercise, and other environmental data as the key to longer survival, but that data isn’t being widely studied. There are so many other factors to keep track of, there simply isn’t room to store that kind of stuff, too.

We want to change all that. We want to build the researcher’s dream database. They need the proper tools to fight this beast. And guess what? Once we compile this kind of data, there is no telling what other implications it may have! This is an investment in our future – our children’s future – and we need your help.

If you know someone who wants to build a better world for research (doctors, scientists, programmers, etc), please tell them about our project. We welcome collaboration, and we plan to be the most valuable resource these doctors and researchers have.

And if you are wondering about the title of this post, go listen to “Radioactive” by Imagine Dragons. I could write a whole other post on this song and the inspiration I get from this band. Maybe I’ll do that!

Five Things You Can Do To Save Lives

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

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

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

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

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

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

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

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

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

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

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

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

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

You can even sponsor our Concert for the Cure online:

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

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

 

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

#greyallmay

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It is Random Acts of Kindness week, which is the kind of thing that keeps my kids at the forefront of my mind. All of them have a deep appreciation for the truly random, and they have made me have an appreciation for it as well. As cool as random surprises can be, they don’t usually have an impact that lasts beyond the moment or the day. Making a big impact takes planning… which got me thinking.

May is Brain Cancer Awareness Month, and we have been pretty vocal about that in year’s past. There hasn’t been much of an impact, though, despite our efforts. I think a big part of that is the lack of a large, concentrated effort. We are all out there doing our own little things, but without an umbrella covering it all and pulling us all closer together. I’d like to change that this year.

Before I tell you how I think we can change it, let me explain why I think it is important to change it:

1. Brain cancer patients frequently can’t advocate for themselves. Why? Well, first of all, the disease is attacking their brains. That means that communication skills can be affected, but beyond just speaking, it can make them more irritated with social situations. Too much stimulation (in the form of conversation or even background noise) can be overwhelming and frustrating. Secondly, if they are not affected by these issues, they don’t want people to assume that they are… so they may try to hide the fact that they are fighting the disease. Some people, like my son, for example, spend much of their time with few visible symptoms and in the fortunate cases, even few non-visible symptoms. They can go on with their lives… but that doesn’t mean the disease isn’t there. It doesn’t mean that their lifespans aren’t being exponentially shortened. This is an insidious disease, and it  may lurk or leave without signs that a casual observer could ascertain. The disease may be defeated, or it may take their life, frequently without friends knowing that they were “that sick”.

2. As clever as it is to use grey as the awareness color for a disease affecting our “grey matter”, the color grey is as “blah” as you can get. Think about it. If an NFL team decides to wear pink for breast cancer awareness, they have immediately gotten everyone’s attention. Pink is bright. It is unusual for a man to wear. But grey? Everyone wears grey. It’s the “new black”. It’s plain, and dare I say it, a little boring. If we got every major league baseball team to wear grey in May, you may not even notice. Half of them already have grey uniforms! It’s not outstanding in any way.

3. There is no marketing firm working on brain cancer awareness month. Breast cancer has some pretty heavy hitters who are willing to spend large portions of their budget on marketing and public relations to influence companies to help them make an impact. Brain cancer charities spend their budgets on research. Frankly, I’m pretty happy that they do, but if we want their money going to research, we need to help them out with the marketing.

So here’s what I propose:

1. I think we should ALL use #greyallmay for all of the events that we do. Whatever brain cancer organization you are raising money for, tag #greyallmay. We can build some sort of basic webpage to rally everyone and explain why this is an issue. We can list links to the various organizations that are making a difference in brain cancer research. We can post pictures of people going “greyallmay” to build the hype.
2. The rally cry should be for everyone to wear grey every day in May. Is that a commitment? You bet it is. But I figure if Johnny Cash can wear black every day of his life, we can all commit to one month a year.