Where Does the Money Go?

Dragon Master Foundation, Uncategorized

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Starting a foundation is expensive. We spent thousands of our own dollars to get the foundation up and running, and even now, our board members regularly pay for things out of their own pockets so that the expense doesn’t fall to the foundation. To date, we have donated over $100,000 toward building this shared database. Our board and our supporters have generously helped us get to where we are today, and we have an exciting opportunity just before us that I thought you might want to help with.

You see, we make connections with people around the world. Telling them about our data sharing project with CBTTC and asking them to help. Our foundation has brought many new voices to the conversation, and that conversation is about to happen in person with at least 15 hospitals and foundations. It’s an expense for the foundation, and we would love your help in sending some of our board members to participate in this momentous event. We need to fly to New Orleans and spend a couple of nights in a hotel. The conference is paying for some of the meals, and typically our board members pay for their own meals while traveling, so that isn’t part of the expense. We are also only covering part of the cost of their flight because we want them to all have a personal commitment to the event. We will have a full day of meetings followed by an evening of discussion. We are taking a videographer with us who can help us share the story of what happens with all of you. 

If you believe that our collaborations are making a difference, please help us get our board to this conference. Every donation to this campaign will be used to further the conversation about the importance of sharing data between hospitals. We’d like to take some branded items with us to help folks remember who we are and be able to reach back out to us as they have more questions after the event. Here’s a breakdown of what I think the expenses will be:

Promotional items $500

Expenses per attendee:

Flights $500

Hotel $480

We have eight people who will take time off work to attend this event with us, so that would be $7,840, plus the $500, for a total of $8,340. That’s not including ticket fees, etc, so I’m setting the goal at $9,000. 

We’ve talked a lot about open access. You hear more and more about the patient experience on the news. All of those words are good, but for the most part, the world is still segregated into the medical community and the rest of the world. This conference is changing that. We will have a room full of passionate advocates sitting side-by-side with the doctors and researchers who need our help. We are building a global team to fight this war on cancer. 

Want to help? We value every contribution! You can see our individual fundraisers and make a donation here.

(Please note that they are just now setting up their pages, so there may be a few more pages appearing over the next few days.)

Brain Cancer Action Month 2016

Dragon Master Foundation, Uncategorized

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

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

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

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

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

Sponsor Runners in Iowa

Sponsor a runner in Kansas here or here

Sponsor a runner in Pennsylvania here

Sponsor a runner in Virginia

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

May 14th

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

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

May 15th

Comedy Night – Hollywood, CA

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

Boston Brain Tumor Ride – Waltham, MA

May 21st

CureFest 2016 – Humble, TX

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

Charleston Brain Tumor Walk – Mount Pleasant, SC

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

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.

People You Need To Meet #35: Ellen Grant

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JustinElliot

My son, Justin Elliott, lived 21 years, 3 months, 4 days and 4 and 1/2 hours. He went through a lot during his young life. When he was four, I divorced his father. Three years later, I moved him to a new town when I married Ed. Justin was almost 14 when I had to hold him while his father was taken off life support and immediately passed away.

Despite all this he grew up into an amazing young man. Justin had a plan, and the world was waiting for him. Education was extremely important to him. He decided to go away to college, attending a dual enrollment program, instead of completing his senior year. I was devastated because I wouldn’t get to enjoy being the mom of a senior. Turned out to be one the best decisions Justin made. That fall Justin matured and thrived. He loved college. Loved his professors, and loved being away from home!! He traveled, by himself, not even 18 years old, to interview at NYU. New York City is a far cry from the little town of Ellijay, Georgia. Of course he was accepted. I thought he should go to Georgia, but Justin was determined to be different. I can’t describe how proud I was of my young man. We celebrated his 18th birthday, and a month later the glass of life shattered into a million pieces.

Justin was home for the weekend. He called me, and said he had a horrible headache and was nauseated. I think now that I knew it was brain related. My mother had two aneurysms, and when something goes on in your head you get sick. But that couldn’t be possible. This was my healthy, athletic 18 year old. It must be a migraine, my sister had them. I understand the first one can be really bad. After several hours nothing was helping, and we headed to the emergency room. After a CT scan the doctor told me Justin had an aneurysm. I remember holding on to the bed rail then going to the bathroom so Justin would not see me hysterical. The memory of Justin being strapped into a helicopter at one in the morning is something I will never forget. Then followed several days of excruciating pain, lots of tests, too many different doctors, and no one who could tell us what was wrong. Then, a specialized MRI showed a tumor. Surgery was scheduled. They said the tumor was encapsulated. They would go in, pluck it out and we’d be on our merry way. Not. February 28th around 5:30, a doctor had to tell me and a huge crowd of family and friends that my only child had 6 months to one year to live. Another memory seared on my brain.

I won’t go into all the details but the next 3 years were filled with chemo, radiation, a year of being on a trial drug, more radiation, many other drugs, more surgery and way too many trips to doctors. Despite having to endure all of this Justin lived his life to the fullest, continuing with college, attending sporting events, going on trips and trying live a normal life.

What I wish I knew. I wish I didn’t know any of it. I wish I didn’t know the pain that Justin would go through. I wish I didn’t have to watch his dreams be shattered. I wish I didn’t know that Justin was more concerned about Ed and I watching him die than he was. I wish I didn’t have to bring him home from NYU, and I really wish I didn’t have to watch as those silent tears rolled down his cheeks on our way home from Athens when we were told the tumors had ” exploded with growth” and the end of out journey was near.

I wish I knew how to be the mother of a very independent young man with brain cancer. How can you let your child go to school a thousand miles away with brain cancer? How can you let him be two hours away, getting himself to treatments and doctor appointments, getting prescriptions filled? He was 18 and legally in charge. As hard as it was, I don’t regret letting him go. What if I had insisted that he stay home while everyone else was off going to college or working and definitely not being home with the parents? Justin wouldn’t let me take care of him. He just wanted to be normal, and he didn’t want anything to remind him that he had cancer. I will have to say that his favorite phrase was “fuck cancer”. Justin actually had a shirt with that on it. He wore it to doctor appointments. The only other time he would mention the word was when I asked him to unload the dishwasher. “I can’t, I have cancer!”

I wish I knew what he kept to himself during those years with cancer. I wish he would have talked to me about it. To this day I don’t know if he ever confided in anyone. His “other” mother, as I fondly call my best friend, texted him those last few weeks. She asked him if he was scared. His reply, “we aren’t supposed to talk about that”.

I could write volumes about Justin, the what ifs and the whys. He is my first thought when I wake and the last when I go to sleep. I will miss seeing him fall in love, get married and have children. I won’t get to see him have an amazing career and make his mark on this world. My biggest fear is that his memory will fade. I am so scared he will be forgotten. Ironically, as I have been writing this, I had to stop and attend a memorial service for Justin’s youth leader. It was much harder than I thought. Justin thrived with Leanne and “came into his own” as he grew up in the church with her. He was mentioned at the end of one of the eulogies today.

I am rambling as I have become accustomed to do. So what I really wish I knew:

How lonely I would be when it was all over. I am very social and having a house filled with family, friends and kids was great medicine for me. The house is now too quiet.

I wish I knew how much people really do care.

I wish I knew how much Justin loved me and what I really meant to him.

I wish I knew that I would become involved with some extraordinary women who would understand what I have been through and will for the rest of my life.

And finally, what I know know:

I am forever changed, and in some ways, for the better. There is a definite line in the sand: before diagnosis and after. I view life and make choices differently now. There is so much that just doesn’t matter anymore. And out of the darkness there will be light again.

52 People You Need to Meet: #20 Sarah Coffin Witte

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What I Wish I Had Known…

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By the time my son Andy was diagnosed at the age of 26 with terminal brain cancer (GBM/PNET, a brutal combination of Glioblastoma Multiforme and Primitive Neuro Ecto-dermal Tumor) there was a lot I already knew. I’d been his mother for 26 years, after all. I knew how to coax a funny little boy out of his moods, how to soothe a teenager through disappointments, how to see the big picture and not sweat the small stuff.

I knew how to let go. In 2008, I was in Maine and both my sons were in California, living a few blocks apart in Oakland, close to each other and loving their community of friends. Byron was a recent graduate of the University of San Francisco, hoping to find a job in public health nursing, and Andy was a musician and barista. He had just fallen in love with a beautiful drummer, just found a band to play with, just rented his first apartment out there.

I knew how to stay strong in crisis. I had risen to that challenge the day Andy was born, when he was taken to Children’s Hospital in Boston with ‘petechiae’, little red subcutaneous dots that indicated a concern for meningitis. I had stayed strong moving out to Arizona and back east again, strong through my husband’s unemployment, strong through the boys’ tearful nights of homework and meltdowns over girlfriends, strong through a devastating divorce, the loss of dear dogs and cats, and strong through an intervention in family alcoholism. I am calm in crisis. This is a good thing. When Andy collapsed in California, and an MRI revealed a large diffuse mass in his brain, and he was scheduled for a craniotomy and biopsy, my new husband and I left our honeymoon and flew west to get there in time to see him that night in the ICU, in terrible and unforgettable (really unforgivable… such a bad hospital) agony. I stayed calm. I comforted others. I made plans for getting Andy back east and getting the medical team lined up to hopefully buy some time from the monster.

I knew how to be realistic. I knew we don’t all get to old age. Having lost loved ones before, and having seen others endure what so many think is just unthinkable, I had done plenty of thinking about the so-called journey, and what befalls us along the way. S*** happens. We are fragile. It’s just biology. It’s nobody’s fault. My aunt, my parents, and even my sister had all lost a child. Children had also died in my town due to bone cancer and heart disease, as well as from accidents. My beautiful cousin, Lisa, died of a subdural hematoma one summer day, leaving two children and a stunned husband. Friends in our lives died of leukemia, breast cancer, and ALS. I knew that there were no guarantees.

I knew how to grieve, thanks to all those losses, though none are as close to you as your child. I started grieving the day of Andy’s surgery. I called my ex-husband at the hospital to see if Andy was out of surgery, heard the terrible preliminary diagnosis, and then called my sister from the runway at Oakland Airport after touching down, and said, “Google this word: G-L-I-O-B-L-A-S-T-O-M-A. Then call me back OK?” She said calling back with the grim news of a twelve to eighteen month prognosis was one of the hardest things she ever had to do. From then on, however, it was our reality. We never hid from it or denied it. That would have been a waste of time, we thought. Call it anticipatory grief: that’s when you know you’re going to lose someone you love. You grieve in private moments, and every day is a journey of courage and love.

I knew how to make the best of every day. Something about the person Andy was, so full of insight (or his own extreme analysis of the world) and appreciation for the best things in life, brought us all to a shared focus on love, fun, laughter, music, art, animals, beautiful skies, firelight, the best of friends. From January 2009 to May 2010 when the cancer consumed Andy’s poor brain and quieted the rage at last, we boogied. We knew how to love, and live with love.

I knew how to trust my instincts as a mother, from Andy’s home birth to his hospice death. Five months before he died, he even fell in love again. People asked who was this person coming into our lives at this incredibly fragile time? The answer was Heidi, a talented, sweet and brilliant woman, who wanted to be with Andy. When I told her, you know he’s going to die and we’re going to have to see him through to the end, and if you don’t want to do it, say so now and I’ll understand, she said, I’m in. How did the universe even bring this star child into my life? Heidi’s previous life experiences brought us domestic serenity, massage, herbal healing, creativity, caregiving skills… even more calm in the storm. She had my back and I had hers. We made it through the worst of days, the worst of nights, and I am a better person for having had her walk into my life. She is now my daughter-in-love, for life.

So after all that, what do I wish I had known? I have asked myself this question, so many times, ever since Amanda posed the question. The first answer is: I don’t wish I had known anything that it is not within a human’s potential to know.

I know there’s no doctor or alternative healer who could have saved Andy. I know we gave him the best of medical care. If Senator Edward Kennedy with the same diagnosis – who could have afforded ANYTHING – went through the same radiation and chemo regimens as our son, and died within the same typical time frame, then I know there was nothing on earth that could have saved either him or Andy.

I know that the afterlife is not for humans to know. I know that wherever we go and if we have any consciousness after we die, no one has ever proved to know. I am fine with not knowing. I suspect we go back to wherever we came from, and I feel no fear or worry about that. I trust it is a place free from pain or sorrow.

I know how blessed I am. I know that the world I live in – lucky, lucky me — cares deeply about me and my family. I had nothing but love and support of every kind. My neighbors fed and housed our extended family as they came and went. My employer gave me security and flexibility. My church and pastor took amazing care of us during and after Andy’s illness and death. My dear husband, Drew, offered nothing but love, support and kindness. Our new marriage went through quite a test, and essentially was put on the back burner for the first year and a half. I found empathy and support through online communities such as Cancer Compass, Young Adult Survivors of Glioblastoma, Daily Strength ‘For Moms Only’ grief support, my Oasis friends group, and eventually, the astounding blessing of the GBM Warrior Women, a private Facebook group. Since joining each of these virtual communities, I have met the people in real life. We have embraced and wept and even laughed together. Nobody knows like somebody who knows. Compassion makes a huge difference.

What I wish I had known then, and what I seem to care most about growing as a skill in my life going forward: I wish I had known how to comfort. Deeply, meaningfully, and successfully. I have learned from others who have journeyed through terminal illness as parents and spouses and friends and children that we want to know what to say. We grope and grasp and struggle. I felt desperately unequipped to comfort my beloved and terrified and outraged son.

Yes, of course, I said many good words. Loving words, the best I could think of. Constantly and every day. I told him it wasn’t his fault. That terrible unfair things happen to good people. I told him that we would be with him to the very end, that he would never be alone, no matter what. I told him he could have as much of the narcotics and painkillers as we could get, and he could manage. I told him how much I loved him, a hundred thousand times. The very few times he crashed and raged and wept and howled in grief over the end of his own life, I held him in my arms and I said I’m sorry. I am so sorry. I am so, so sorry. I said I wish there was something, anything, I could do. I said I wish I knew words to say. I said I wish it could be me instead of you. I said I am sorry they haven’t found a fucking cure; they’re working on it, sweetie, but right now there’s nothing. I said I know, it sucks! I said I can’t believe it either, that there’s nothing else out there. Isn’t it terrible? Isn’t it unacceptable? I said you will never be forgotten. I said you have been an amazing person and goddammit yes, please, you have to believe this, you really have made a difference in the world. Yes, I said, you have, I swear! I said you have given people so much, and the ripples will go on and on and on. I said I’m sorry. I said I will never stop loving you.

But what can you say to really, truly, deeply comfort someone who is dying, someone young and strong, who doesn’t want to die? Someone whose life was just coming into focus? Someone who loved life so much, and wanted to go on? What can you say that would put that person’s mind at ease? I don’t know. I didn’t want to say anything that was not true, that I didn’t absolutely know for sure, so I said I love you. I said thank you for being in my life. And I have said it every day since he died. And I will say it forever. I love you.

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Cancer is a Completely Solvable Problem

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This is a completely shameless photo of our dog, Cooper. Because everyone reads stuff on the internet that has a cute animal pic.

Do we have your attention now? (This is a completely shameless photo of our dog, Cooper, because everyone reads stuff on the internet that has a cute animal pic.)

Did that headline get your attention? It certainly got my attention when a researcher said those words to me a few days ago. As a lot of you know, we have formed Dragon Master Foundation to build a database that will make cancer research easier, faster, and more effective.

As part of our research into what exists already, we identified a large public resource called canSAR which aims to support cancer research and drug discovery by bringing large volumes of different data together. I have spoken with the leader of the canSAR project, Bissan Al-Lazikani, who agreed with the importance of building a global clinical database to support clinicians and have more immediate return for the patients in the clinic. As canSAR is an open public resource, there are ample opportunities for future links and collaborations with Dragon Master Foundation which we will aim to pursue.

We are still in the very early stages of development, so some would say I shouldn’t be sharing this information with you. I believe, however, that we need all of you to understand what is lacking in the world of research today so that you can help fight for these tools that the researchers need.

There are a lot of really good causes out there. I have friends who are committed to helping the homeless, rescuing animals, or fighting for research dollars for a variety of diseases. I’m asking all of you to put those goals aside for one moment. What if you could really do something that would cure cancer? Not one type of cancer, or one group of patients. But cancer. Period. I think that this database can do that. And there are some pretty respectable researchers who also believe that.

So here’s what I need you to do. Tell people about the Dragon Master Foundation. Share our Facebook page (https://www.facebook.com/DragonMasterFoundation). Follow us on Twitter (https://twitter.com/DragonMasterFdn). Share our vision.

If you are in the medical profession, give us a quote we can use about how this type of database is important.

If you are a patient or caregiver who experienced a “well-oiled” communication machine during treatment, or conversely, a lack of communication between hospitals, please tell us what you witnessed. And please share our vision with any of the doctors on your team.

If you can give, please consider donating toward our database. It is a massive need, and we will need massive funding. But wouldn’t you like to have some small part in bringing about a cure for cancer?

At this point, we are run completely by dedicated volunteers. However, the time is fast approaching when we will need to bring on a project coordinator who can take our project to the next level. Foundation funding is key to making this happen.

Lastly, I’d like to thank all of you who participate in the blog, social media, or other efforts that support Dragon Master Foundation. This is a wild, amazing ride for me and I want all of you to come along. Dr. Anna Barker told me, “Changing the world is hard, but it can be done.” Let’s do this!

52 People You Need to Meet: #19 Austin Pearson

52 People To Meet Posts

David(ESPNhat)& Austin

What I wish I knew before my brother got cancer was that not having him around would be the biggest obstacle in my life. For most of my life I have always been in a group of four. Meaning it was me, my brother, my mom and dad. Even after my parents got divorced, there was still an even number of people and I always got paired up with him. He and I were almost inseparable. Well, as inseparable as a brother and sister could get. Granted that changed slightly when we got into high school, but still we were still pretty close. When he passed I was alone. Not completely alone, mind you, but the person who I did just about everything with was gone.

Today marks the second year of the day David passed away. My life has changed significantly since then. I’ve grown up in some ways, but in some ways I have stayed the same 16-year-old I was when he died. When you lose someone a part of you stays the same. Stuck in time. You stay that person you were they day it happened. There’s not a day that goes by that you don’t think about the person you lost. Sometimes you see something that reminds you of them, and it makes you smile. Then you get a little sad because you can’t tell that person what it was that reminded you of them.

However, at the end of the day you might be relieved or maybe even a little happy because you know deep down that the person you lost is now free. Free from sickness. Free from spending countless hours unhappy in various hospital rooms with needles going in and out of their body. Sure, you are going to wish that they could have lived to see 100. Unfortunately, that’s not how life works. I learned that now. I’m not happy that my brother is gone. I’m not happy that I have to sit next to the guy that reeks of B.O. on a plane instead of my brother. I’m not happy that I have to say, “my brother passed away from brain cancer” every time a conversation about siblings come up. But I am happy that my brother is cancer free. I am happy that he is up in Heaven making all the little boys and girls who have passed away smile until their family joins them. I am happy about the impact he made on the people he knew and even some he didn’t know. He is my brother, my best friend, and now my guardian angel.

Editor’s note:

Today is Mother’s Day, and some of you might have been expecting a post from that perspective. In many ways, Mother’s Day is overshadowed by David’s death for our family, so I wanted to share Austin’s story with you today. I’m so proud of her, and I’m happy to share a little bit of her with all of you. May 11th also happens to be my brother’s birthday, so we have reasons to smile and celebrate today. The sadness is always there, however, just under the surface. Be gentle today with those you know who have lost a loved one. Those smiles may be held on by sheer force of will.

 

Every Person To Their Part

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This morning I got a message from a brain cancer friend asking about my Facebook profile photo. It features my son, an awareness message and his date of birth and death. It’s very classy, but I didn’t make it. The lady who did, made it for me before we ever met.

Her name is Cindy, and she has made it her mission to make these pics for anyone who wants one. I gave my friend her info, and I’m sure she will make him one – even though they’ve never met.

I have another friend who makes awareness images every day, Monday-Friday. It’s her second job, only nobody pays her. She just does it because it needs doing.

Yet another friend also makes awareness images from her artistic perspective. Others spend extra time on Facebook just answering questions from new caregivers or patients.

I’ve been in the spotlight a little lately, but I wish the world would take the time to see the amazing work being done, one small gesture at a time, by those irreparably changed by the world of brain tumors/brain cancer. It is remarkable.

I wish I had never had a reason to be here, but I am so thankful to be part of this community. A friend of mine likes to quote something David said to her one day. He said to “be a giver not a getter.” I guess that’s how we are blessed to be surrounded by so many givers. It’s part of David’s legacy.

We are coming up on David’s angelversary this weekend. It’s so hard to wait to see him again, but I know he sees us. When he checks in, I want him to see us giving others hope. I want him to see that we remember him and are trying to be as nice to others as he was. (That’s impossible for me, but I try!!) And I want him to see that we are part of a group that is making the world a better place, one small gesture at a time.