Who’s Really the Enemy Here?

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.

Please donate here to help.

White House Champions of Change for Precision Medicine

The Precision Medicine Champions of Change with NIH Director Francis Collins.

I have always been proud to be an American. I like to think that I’ve done things for the betterment of our country through the years. For more than a decade, I worked with paralyzed veterans, and I like to think I made a positive impact there. It is rare that any of us get any major recognition for our work, but on July 8th, I was invited by the White House to speak about my new passion – cancer research. Along with 8 other Americans, I was recognized for making a positive impact on precision medicine. The award was a great honor, and it was so motivating to be in the room with so many passionate, innovative people!

While the experience is still fresh in my mind, I wanted to share some of it with all of you. As you might imagine, an honor like this was uplifting and also a little intimidating. I mean, the White House! I had been as a visitor, but never as a guest! We had specific times that we were allowed to enter, based on what we were doing that day. I was allowed in early, but the folks with me had times staggered throughout the day that they could enter.

Richard was with two key players in the database effort – Adam Resnick and Jay Storm. I was so glad to have all of them there to keep my thoughts on track. Talking with them is so invigorating! Their clarity of vision and intense desire to help children is so motivating. I wish I could relate their passion to everyone. Being in that environment is like  watching a hot air balloon come to life… Filling and filling until it rises off the ground and soars to its higher purpose. We all have that purpose inside us, and being with others who can help us see our purpose is one of life’s most amazing gifts.

So they were with me in spirit, but I entered the building alone. After a security check, I was in and looking for our meeting room. The Champions gathered waiting for our turn to be filmed for a quick segment on precision medicine. Not sure when that will be available for viewing, but it was a good way to start the day.

After that, we went into round table discussions on various aspects of precision medicine. Richard, Adam, and Jay were all in the building in time to participate in these sessions. There was valuable information shared, but the sessions were too short to really hear from all the participants. There were many people in the room that I wanted to hear more from. I’m hoping that we will have a chance to connect after everyone returns to their normal lives.

We had a quick lunch break but the guys and I had gotten separated. Luckily, that is about the time that Kevin Beezhold arrived. Kevin is one of the people who nominated me for the award so it was great to get to meet him in person. He and I discussed his thoughts on my upcoming panel questions, and it was good to get his perspective.

By this time, we were able to reconnect with Richard, Jay, and Adam. One last pep talk and I was off to meet NIH Director Francis Collins! He was very aware of my personal story and seemed receptive to Dragon Master’s database project. I got the chance to tell him that we would love to work in conjunction with the NIH and he seemed receptive to that idea.

A portion of the afternoon is available on YouTube: http://bit.ly/1fv5nne

The room was filled with passionate people who care deeply about making a positive impact on healthcare and precision medicine. And oddly enough, they seemed to be mostly in agreement on the changes that need to happen:

• greater sharing of data, especially to new populations of people like patients and their families
• education of the general public so they will understand their rights when it comes to data
• special care to include parts of the population that may feel alienated from the process

I’m proud to say that the database we are working on will definitely address the data sharing issues. I hope that as we are building it we can also help people understand their role in how this data can be used. We want to include everyone in the process of collecting and using the data, so I hope that we can be transparent in the process and help everyone feel secure about their choices to share data.

In an effort to help people understand why this is all so important, I’m going to be making some videos about our database and how it can be used. We will be taping some of these videos at WSU on Thursday, July 16th at 10am in the Rhatigan Student Center. I’d love it if you could join us, and ask any questions you may have about Dragon Master Foundation and our database.

Seven Ways To Celebrate “National Cancer Survivor’s Day”

National Cancer Survivor’s Day is a relatively new day of recognition on my radar, but I think it is really important. It is significant to me because I sometimes need a reminder that there ARE people who are surviving cancer. You see, I do a lot of work these days with the DIPG community – a pediatric brain cancer that claims the lives of nearly every patient. For them, being a survivor means you are alive today. It is the most stark reminder that we should all appreciate each day. Every. Single. Day.

So on this day to honor survivors, I thought I’d touch on some things you can do – every day – to make a difference for those fighting the cancer battle. I really want to focus on the “mundane” things that most of us do every day, so I’m gonna go through my typical day and show you how easy it is to make a difference.

#1 Social Media – When I get up in the morning, I typically check Twitter or Facebook to see what my friends are up to. I like to share their positive messages and I frequently share a message about cancer fundraisers. (Even if you can’t afford to participate in a fundraiser, sharing it on social media is a powerful way to help.)

#2 Pretty Flowers – In the summer, I will typically let the dog out and then wander into the back yard with him for a minute or two. I like to check the progress of the flowers, and that reminds me that National Brain Tumor Society has a bulb fundraiser that lets you have a annual reminder of your gift to their cause.

#3 Recycling – Back inside, I usually grab a quick bite to eat and then shower & get dressed. As I use up containers, I drop them into a small box for recycling. The salon I frequent has signed up to help with recycling, too, so our containers add up pretty fast.

#4 Wearables – What I’m wearing each day will vary, but on “casual” days, it’s almost always some sort of awareness shirt. Dressier days see me wearing a wristband, bracelet, or necklace. On a good day, I can wear all four things!

#5 Online Purchases – Then it’s usually time for the computer. If I need to order anything online, I make sure I check the vendors that use iGive.com or AmazonSmile so I can donate a percentage back to Dragon Master Foundation. My emails have a tagline that points people back to those simple ways they can raise money for charity. I really think everyone should use AmazonSmile. It doesn’t cost the participant anything, and it can add up quickly for the charity.

#6 Social Media – Ok, I know I’m listing this again, but things go by pretty fast on Twitter, so one tweet a day won’t necessarily reach a lot of people. During the day, whenever I end up on social media, I try to add a Tweet for the cause.

#7 Food – At the end of the day, we either make something at home or go out to eat, but either way, I’m careful to pay attention to the brands that support cancer research – especially brain or childhood cancer research. Those are much harder to find that other types, but you can bet we are there when Chili’s supports childhood cancer awareness every year! And our grocery store, Dillon’s, lets us donate a portion of our grocery bill to Dragon Master Foundation each time we shop with our rewards card.

So there you have it. Seven easy things you can do nearly every day to make a difference in the battle against cancer. Maybe if we all make it a daily effort, there will be a few more survivors to celebrate next year when this day rolls around.

Celebrate Life

My family would tell you that I get a little wrapped up in brain cancer awareness. It’s true. My brain is always thinking about how I can raise more money for Dragon Master Foundation and how I can help people understand why this database is so important. It’s a huge task, and it can be all-consuming. I’m grateful for my family’s support, but I don’t ever want them to feel like they take a back seat.

Today is Austin’s 20th birthday. I no longer get to call her “the teenager”, and she has definitely been taking on the role more and more of a young woman – not just a “kid”. It makes me a little sad – as I’m sure it does her. After all, those carefree days of childhood are to be treasured. I feel like she didn’t get to have a fully free childhood, in part because of cancer. It took David’s life, but it also took Austin’s best friend.

Despite that, she has picked herself up, dusted off the disappointments, and started building the person she wants to be. She is smart and has a sharp sense of humor. She is creative and has a sense of timing and awareness that gives her an insight that most people never develop. She is solid at the core, and I’m so proud that she is beginning to trust herself and her own decisions. I believe that once she settles on her true passion, she will be unstoppable.

In some ways, she will always be that little girl following her brother. But in so many ways, she has had to blaze her own path. Her first steps were timid, but she walks with more confidence every day. It is an honor to be able to celebrate her life today.

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.

For Auld Lang Syne

I have an app on my phone called “Time Hop”. It goes back in time to year’s past and pulls out photos from your phone or Facebook to show you a little of your personal history. Today, one of the photos it showed me was of my Facebook statuses from 2010. What struck me was how happy they all were. How thankful. How EARLY in the year. You see, all of the statuses in the picture were from the first eight months of the year. David was diagnosed with cancer in month 9.

In hindsight, I always wonder if I was thankful enough before cancer entered our world. If I appreciated my kids enough. If I knew how blessed we were in spite of our hardships. Then today I saw this recap of my year before cancer. There’s no doubt that I knew what my blessings were. It wasn’t all sunshine and rainbows, but I reveled in them when they appeared.

What really struck me, though, was how blissfully unaware we were. We had “normal” problems. The kind that you can pull yourself up by your bootstraps and get through. And then, David got an excruciating headache that led to three weeks in ICU and brain surgery. All the while, we believed that we would just pull together as a family and get through it.

But cancer isn’t always like that. Yes, being positive and fighting hard is important. I believe that it can make a huge difference in treatment and survival, but it is no guarantee. Cancer sneaks in unexpectedly and steals away your normal. To me, that is the most alarming thing. There was no warning.

In some ways life is just like that. You never know what’s around that next curve. The end of the year seems like a good time to look back over those curves and smile where you can, and cry when you must. More importantly, it’s time to look ahead to see what you can do to smooth the curves in the coming year, both for yourself and for those around you.

For me, looking ahead means finding innovative ways to fight cancer. I know David is looking down on us urging us forward. I know that he would see each life as precious and worthy of the fight. As we enter 2015, I hope that you will join us to make a positive change in the world of cancer research.

Working Together for A Brighter Future

This week I had the great pleasure of speaking with Dr. Peter Adamson, Group Chair of the Children’s Oncology Group (COG). For those of you unfamiliar with COG, more than 90% of  children and adolescents diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions. Their goal is to cure all children and adolescents with cancer, reduce the short and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer. That matches our mission pretty well, so I was excited to learn where we might be able to collaborate.

COG is currently focused on collecting biospecimens and clinical data. In layman’s terms, they are collecting cancer specimens (tissue, blood, etc) as well ad information on the child’s diagnosis, treatment and outcome. They have collected a massive amount of data over the past 50 years. They have well over a million biospecimens! More than 350,000 patients have shared data with them. They have biorepositories and databases in different parts of the country and work with over 220 hospitals in the US & Canada.

I am very impressed by what they have accomplished, but ultimately, I believe that the infrastructure we are building can improve the work they are doing. Their focus is collecting the specimens and data. Our focus is taking those specimens and data and making them a perpetual resource backed by robust computational power to allow them to collaborate with other researchers and also analyze and visualize the data in new ways.

To give you some idea of the scale of the data, let’s look at the numbers. There are approximately 14,000 children a year diagnosed with cancer in the US. Collecting a biospecimen would cost somewhere in the range of $1,000. (The NIH currently values that at around $500, but the actual institutional cost is thought to be much higher, thus my $1,000 figure.) So just to collect the biospecimens for those patients, you are looking at $140,000 per year. However, that is just scratching the surface of what needs to be done. Those specimens have to be stored (visualize giant freezers with robots to access the individual samples), categorized, and matched with corresponding clinical records.

Traditionally, most hospitals and foundations have been unwilling and/or unable to invest in the infrastructure that it would take to compile this amount of data. COG demonstrated real vision by collecting this data and they have been able to use it to forward science. Dragon Master Foundation believes that additional computational power, or “big data” analytics, will help them find the cures they seek even faster.

Dr. Adamson said he felt Dragon Master Foundation is taking “a sophisticated look at the challenge.” We know that building this type of computational infrastructure will be expensive, but we also know that it will exponentially decrease the amount of time it takes for researchers to collect and query data. Faster answers to their questions means faster cures for us.

There is no doubt in my mind that we are building a resource that will improve cancer research. It ultimately will help cancer researchers throughout the US, and probably throughout the world. It will make the work they have been doing for years more relevant.

To learn more about Dragon Master Foundation, please visit http://www.dragonmasterfoundation.org. To learn more about the Children’s Oncology Group, please visit projecteverychild.org or childrensoncologygroup.org .

It’s Kind of a Big Deal

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!

Sometimes You’ve Just Got To Stop and Say Thanks

My “to do” list is LONG. Work projects, running a non-profit, and life in general make me a busy gal most of the time. But today, I had to pause in the middle of all that to just say a very public and very heartfelt “THANK YOU!” to the people in my life who believe in me and offer their own special kinds of support.

My family is always behind me encouraging me and helping me accomplish various tasks, and I don’t thank them enough. On top of those blessings, I had two really special people reach out to me today to give their unique support. The first one was a very concrete donation of office supplies and furniture that we can use to set up our offices for Dragon Master Foundation. We don’t even have office space yet, but she had the vision to think of us and make sure we would have everything we would need for 6 different workstations! Everything except computers and phones are taken care of with this one generous donation! I’m so excited to have this part of our office needs met!

The second person let me know that he has mailed a piece of original art that he painted in memory of my son. This particular artist is a great friend that I have not seen in many years. He is someone I have learned a lot from over the years, and I admire him as a person and an artist. I am so touched and honored that he painted something in memory of David. And he emailed me to let me know it is coming, which means I have a few days of eager anticipation! How fun is that?

I guess my point to this post is that we all have gifts to give – big and small. From helping carry supplies in from the car to using your artistic talents to encourage others gifts come in all shapes and sizes. I may not verbalize it enough, but I am very aware of the many gifts that are given to me, and I am very, very grateful. And dare I say… happy. 🙂

Saying goodbye

This blog series we’re doing, 52 People You need to meet, was designed to introduce you to people living through the extraordinary circumstances that brain cancer introduces to life. Today, however, I want to introduce you to someone that you will never meet. You won’t meet her because she passed away this morning, and outside of my parents, was the largest single influence on my life.

Her name was Pauline Jones Elmore, and she was my maternal grandmother. “Miss Polly” to those who knew her about town, she was at once classy and supremely humble. Generous to a fault, she gave more of herself than anyone I’ve ever known – and I know some generous folks. She didn’t want an announcement in the paper, but she didn’t mention social media, so I’m going to write my own tribute to her here, knowing that any words will fail miserably in comparison to the woman.

When I was little, too young to remember, her first husband died. They had six wonderful kids, and my grandfather is remembered warmly by the family. When I was still small, she remarried the only man I remember as a grandfather, and he made such an impression that I named my daughter after him. My grandmother have us the gift of these wonderful men in our lives. Through her parental guidance, she also gave us the gifts of a close family with aunts, uncles, and cousins who are people I am proud to call my family.

Her open door – to family or strangers- taught me a lot about how to treat people in this world. Too often I worry that my house isn’t clean enough (hers was always spotless) or that i don’t have anything to offer (she always had food at the ready – and a candy bar or two if you knew where to look). I’m sure she worked hard to make her home welcoming, but it was mostly welcoming because of her. Over the years, various family members lived with her as get navigated a rough patch of life, and she was far more gracious about it than I think I would have been.

She loved music, and frequently surprised me with her choices. She wore colorful clothes in her prime, always with the perfect matching accessories. She liked to travel, but I think she likes being home more.

At her house, you could count on family dropping by, more food than any group of people should eat, and one or more spoiled dogs. When I was a kid, I remember her going to McDonald’s to get the dog a cheeseburger, and then almost as an aside, asking if I wanted one too.

I also remember one day, in the parking lot of that same McDonald’s, when she parked the car after going through the drive-thru for our food. I asked her if something was wrong, and she pointed to an old man walking down the street. He had on a long brown coat, and he looked pretty dirty. She said, “I’ve seen that man before, and I don’t think he has anywhere to stay. It’s gonna get cold tonight, and I’m gonna go give him some money so he can get a hotel room.” She took every bit of cash out of her wallet to give to him. That’s who my grandmother was in a nutshell.

She outlived two husbands, two of her children, and a few of her grandchildren. She was a pilar of strength showing that life goes on even after loss. She had faced death many times, and I know that she was ready for her own. That makes it slightly easier, but I don’t like the idea of a world without her.

Everything I am, I owe to her. (Yes, my parents did a great job, but without her, my mom wouldn’t even exist.) Even if I live as long as she did, I will never do half as much good for this world.

So today, on this day that she left earth to reunite with her loved ones in Heaven, I wanted to introduce you to my grandmother.

PS: The pic is of my two kids and “MawMaw”. David, I’m sure, was there waiting to give her a big hug when she reached Heaven’s gates. Austin will be here with me, carrying forward their legacy.