What is Your Field of Dreams?

It 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.

 

Home Checklist for Long Hospital Stays

We saw a checklist for things to do while you are on vacation, and it made us think of how many families end up out of town for treatment for long periods of time. If you are like us, those times may come rather unexpectedly! So if you are a friend or neighbor, this list might offer some good tips on things you could offer to do for a family that is gone for medical treatments.

1. Set up a schedule for lawn maintenance. For families that don’t already hire out this service, setting up a system for them will be a big time saver, and may keep them out of trouble with the homeowners association.
2. Check on their trash & recycling. These bins may fill up even while they are gone. We had people feeding our cats, taking out the litter, cutting the grass, etc. If those jobs are being done by neighborhood youth, they may not think to take the trash and recycling bins down to the street.
3. Turn the water heater to vacation mode. Believe me, water heaters are the last thing on your mind when you have a sick loved one, but this could save them on energy costs. Most families facing long-term illnesses are counting pennies, so this is a nice way to help. Just make sure you leave a note in a prominent place to let them know that you changed the setting!
4. Ask if they would like the water turned off to their house. During the winter, this may make a lot of sense, but not if they have pets that are still in the house. Again, if you do this, make sure to leave a prominent note. Even though they approve the action, they may not remember doing so by the time they make it back home.
5. Ask if they would like you to randomly check on things. If there are no pets in the house, it may sit empty and quiet for long stretches. Leaving a random light on or parking a car in the driveway can give the appearance of activity that may ward off thieves. If it is winter, shoveling the walk definitely shows activity, and could be a nice touch if the family does get to come home.

Do you have any other tips? Please share them below.

 

People You Need To Meet #39: Andie McConnell

What I wish I knew before my friends’ son got brain cancer… This may seem a strange twist on the theme of these blog posts but I wish I knew my friends before their son got brain cancer. When I met them, their son had been in remission for a couple of years, but the pain over what they experienced was still raw. As I got to know the couple, she spoke of the experience of facing cancer with a child and the disappointment in the friends who disappeared during this difficult time. So in addition to the fears and grief that come with a child facing cancer, she spoke of the loneliness and the struggles as a family. She talked of how people they believed would stick by their sides did not, and that some people they didn’t expect to help, did.

Her words really resonated with me, as did her talk of the pain of watching a child go through cancer treatment. Hearing their struggles made me wish that I had known them and had been able to be there for them during their journey because I knew I would have been one of the ones who stayed around to help. I thought of ways I would’ve helped to lighten the load on them, how I would have been there to listen, to help with meals, their house and anything else they couldn’t quite find the time to do. Years later, I met a family with a child with a new cancer diagnosis, and my friend’s words about the loneliness of pediatric cancer rang in my ears.

I decided to make an effort to help them through fundraising and emotional support. Looking back , in some ways I realize I did it to make up for not knowing my friends before their child got cancer. As this family’s child reached the end of treatment, I realized there just might be a real need for support of other families facing pediatric cancer. I surveyed families and found there certainly was a need. I brainstormed how best to provide this support, and it evolved into what is now a nonprofit based in Fredericksburg, VA that focuses on the needs of the parents rather than the child. We provide meals, house cleaning, lawn care, hair cuts, gas cards, a financial relief fund and emotional support to the parents in order to relieve some of their stress and to provide them with more time to focus on their family. I wasn’t able to support those friends during such a difficult time because I didn’t know them, but now my organization provides support to families in parts of VA and MD with similar struggles. We fill the void of the friends who, for whatever reason, are unable to help and for the friends they have yet to meet who will wish they had been there in such a difficult time.

Editor’s note: You can learn more about Andrea’s nonprofit, the Fairy Godmother Project, by checking out her website: http://www.fairygodmotherproject.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!

Snowballs in May!

Not sure if you’ve seen the weather, but Kansas had snow on May 2nd. SNOW! In MAY! That’s a little crazy, but it is a good representation of how different THIS May is going to be.

There has been a lot going on for brain cancer advocacy, and it is only the 3rd day of the month! I’m so excited to see the real differences we are making! All day yesterday, I was getting updates on stuff, and I felt like my list from yesterday was inadequate by the end of the day so I made a new list.

Let me remind you that this is just a small sampling of what is going on out there. We are trying to post stuff on the Operation: ABC “Annihilate Brain Cancer” page, but please forgive us if we miss something. Likewise, if you know of something we can help promote, please let us know.

Here’s my updated list of things you can do no matter where you are:

1. Wear Grey. 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! #GreyAllMay

2. You can donate via IndieGoGo to make sure the concert is a big success:
http://www.indiegogo.com/projects/concert-for-the-cure-wichita/x/3067213?c=home

3. You buy something in the Origami Owl fundraiser that is going on throughout the month of May:
Origami Owl designer, Karletta Pergeson, has offered to donate 10% of your purchases made between now and May 30th to “Concert For The Cure”. Origami Owl is a unique line of lockets. Every Living Locket™ is custom designed with charms that tell the story of your life and represent the things you love. They even have a grey brain cancer awareness ribbon!

Please place your orders online at http://www.momoftwo.origamiowl.com. There you will find everything you need to design yourself a beautiful locket! The website is set up in an “a la carte” style, where you choose which locket you would like, then pick the chain, charms and plate you want for the inside. And if you choose, you can have dangles to hang outside the locket. Upon check out please select “Concert For The Cure” so that your purchase will be counted.

4. Take a trip! Eaglewings Travels will donate 10% of any bookings in May to Concert for the Cure! You don’t have to travel in May – just book the trip before the end of the month!

How awesome is that? Take a wonderful vacation and know that you are helping others at the same time!
To book, you can email Colleen Atherton, Owner at catherton@cruiseholidays.com or call her at
316-214-5426 http://www.eaglewingstravels.com

5. Change your Facebook profile pic. If you haven’t seen an image you like, you can find a few here:
http://campaign.customink.com/grayinmay

6. 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.)

7. 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.

8. 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

9. Send a Tweet. Novocure will donate $5 to the Chris Elliott Fund (a charity that helps patients and families with GBM diagnosis and supports brain cancer research) when one of their tweets are retweeted – using the hashtag #TuneIn2GBM Look for them on Twitter, @EndBrainCancer ! Follow them, then retweet our messages that uses the hashtag #TuneIn2GBM.

To retweet: put your mouse over the message. A small menu pops up at the bottom. Click the one that says RETWEET. This will copy our message to all of the people who follow you. Then follow up with that tweet by posting a message to your followers, asking them to retweet the message you just sent.

10. When you do any of the things on this list, you can use #GreyAllMay on Twitter to let people see your activity for brain cancer advocacy.

We’ve made the snowball, now let’s push it down the hill!

Five Things You Can Do To Save Lives

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