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!

THEN COMES SPRING

52 People To Meet Posts, Lessons Learned, Uncategorized

This post is written by my friend, Lori Hatfield Dickinson. Her words moved me, and I know several other people who could use them right now, so I asked her if I could share them with all of you.

12909463_10156736904935503_176181431140341521_oAs redbuds bloom and tulips turn their heads toward the sun, it’s bittersweet to think of the difference a year makes. It’s spring – literally and figuratively. After months of being quiet and reflecting, I feel a deep burden to write more honestly about my journey with God, grief and guilt.

Last year, fear was my constant companion. I saw spring as an ending. It was the end of a life I cherished with a man and family I dearly loved. There was no joy for us as the world bloomed because Michael was quickly fading.

Despite everything I said I believed at that time, I doubted God. I was mad. I was devastated. I made futile attempts to cut deals with Him, such as, “God, if you will just heal him, I will…” But mostly, I just felt abandoned.

Everything seemed like such a waste. A waste of a man with so much to give to the world – now unable to talk, to see, confused by simple instructions and confined to a chair. A waste of all the time investing in a marriage, a life, future plans that were not to be, all of which was compounded by the helplessness of watching my children lose their innocence without the ability to intercede. In March 2015, I wrote: “It’s as if we are standing on railroad tracks with a locomotive barreling toward us. I can’t stop it or move, so I’m constantly bracing for impact.”

It’s difficult to think anything good could come out having your heart being blown through your chest when you hold the lifeless body of the one you vowed to love and cherish the rest of your life. The primal cry from the depths of my heart when death came is something I will never forget.

In the ensuing days following the funeral I watched sunsets daily from Michael’s grave, sat in the darkness at night staring at his photo, read and re-read letters he wrote to me, smelled his clothes in the closet, and even at times, prayed the world would end. I was never alone, yet, I never felt more alone. Did I really believe there was a God and a Heaven? And if there was, where was He?

I began two “offline” journals. One, written directly to Michael. The first entry was the day he died.

June 15, 2015

You went to Heaven this morning.
I’m broken, lost, empty, alone.
I kissed you over and over.
I miss you.
For the first time since we met, you’re unreachable.
Our son is devastated. Grace is crushed.
I look toward where you’ve always been and the chair is empty.
I’m living my worst nightmare – I’m in a world you’re not in.

A little more than a week later I began a faith journal of sorts. It was a desperate attempt to work out whether God abandoned me or if I was the one who abandoned Him. I wrote to God…

June 26, 2015

When will you comfort me?
I am profoundly sad.
The truth is what I need most.
Give me understanding.
Strengthen me.
Be gracious to me.
Direct me.
Turn my heart.
Turn my eyes.

On June 30, 2015, I wrote and prayed this Psalms (31:10, 14-15):

I am dying from grief; my years are shortened by sadness. Misery has drained my strength; I am wasting from within. But I am trusting you, O Lord, saying You are my God! My future is in your hands!

I wanted to wholeheartedly believe. I just couldn’t.

Contrast that with my entry to Michael on the same date…

June is gone and so are you… I think I smiled more than I cried today when I talked about you.
I count the hours throughout the day – they go so slow. I like the days best where I sleep. I’m seeking God’s will. It’s my only hope for peace in all this. I wish I could be with you.

One day at a time sounds trite, but it’s true. God began opening doors before I even knew they were there. Through the journaling, sleepless nights, questions and tears – He slowly softened my heart. So many years I “served” God out of fear, obligation and pride. But, I didn’t truly know Him, love him, believe Him like I thought I did. It’s not always a priority to build a relationship with God when the world seems right. Now, I was desperate. And as a parent holds a heartbroken child – I started to feel God everywhere.

As I read my posts and journal entries I can see the progression I couldn’t see in the midst of the storm. I wrote only the following words on Sept. 1, 2015, from 19th century pastor Charles Spurgeon in my faith journal that resonates today…

“Don’t you know day dawns after night, showers displace drought and spring and summer follow winter? Then, have HOPE! Hope forever, for God will not fail you.”

God did not fail me, despite my disbelief.

He comforted me through Bible readings, books, church, people and prayer. He still does. He changed my heart and my priorities. I no longer view the world or problems the way I did before. A friend shared God was working faster in some areas in my life than others to make himself so obviously known I couldn’t deny Him. Maybe my heart was truly closed off that much.

In November, I wrote for the last time in Michael’s journal. The words captured what I’ve wrestled with and still do – the guilt associated with my disbelief, grief and survivor’s guilt:

Nov. 10, 2015

Passed our anniversary and approaching five months and the holidays. I don’t feel you around much anymore, but I’m hopeful you’re well.

I feel guilty for living and being able to love again. It doesn’t replace you, but I’m happy. That is a miracle… I’ve cleaned out the closet and I’m getting ready to remodel. I need the house to be different, the space to be new. I’m still sad when I think of you being so sick and the way you died. But, you have taught me how gracefully it can be done.

When I read back I remember all the feelings and emotions, but I also see how far I’ve come. While I may not feel you near, I do know God is, and my life is not finished.

I will never forget you. Your work here was finished, your legacy is big, and your memory will always live on in our lives through the love we now carry forward.

Goodnight Michael.

My pastor asked the question from a series titled, “When God Doesn’t Make Sense:” What if the scene of our greatest disappointment was the setting for our greatest moment? He used the illustration of Lazarus’s story – how with God, a waiting season is never a wasted season and God’s delays are not necessarily God’s denials.

Waiting is never wasted… It’s a paradigm shift for me. Waiting began on Sept. 27, 2013: Waiting on test results, waiting on radiation, waiting on chemotherapy, waiting on doctor appointments, waiting on planes, waiting on MRIs, and then, waiting on death. The time that passes after a terminal diagnosis is at a much different pace. Time passes quickly up to the point of death, then, it crawls – a day is a week, a week is a month and a month is a year.

However, waiting is not wasted when spring comes forth from winter. The trees roots are a little deeper and the world comes alive anew and refreshed.

It is difficult to bless and release the guilt of disbelief I carried in my heart for God through much of Michael’s illness; the guilt of being happy more than sad, seeing another spring… And yes, a measure of guilt for being in love with someone who knows my pain and walks the same path I do. That, in and of itself, could only be a gift from God.

But even as I wrestle with guilt and grief, I feel hope in the depths of my heart and soul.

Hope that God truly answered my prayer of healing for Michael in his perfect way and will.

Hope, that despite my actions, He didn’t or will never abandoned me.

And in surviving an experience I’d pictured to be unsurvivable – Hope that He isn’t finished with me yet.

 If you would like to read more of Lori’s writings, you can check out her blog here: www.thesuburbwoman.com

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We’re Gonna Make Dreams Come True!

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We are so excited about our first official RunDisney event! Team Fired Up has some great team members who are running the 5k, 10k or half marathon with us in September, and we want you to be there, too! Sign up and fundraise for cancer research while you train! Disney runs are like no other! Full of magic and surprises! We have a limited number of spots, so sign up fast!!

So many of our cancer warriors make special memories at Disney Parks. Come make some memories of your own while you help…

Posted by Dragon Master Foundation on Wednesday, March 16, 2016

#MomentsofMagic

Dragon Master Foundation, Uncategorized

Cancer can be one of life’s most difficult challenges. It has brought more pain to my life than I care to remember, but it has also given me great awareness of the little moments in life. I think it teaches a lot of people about gratitude, frequently in ways we wouldn’t imagine. I know trying to imagine what it is like to live with a cancer diagnosis can be overwhelming, especially if you think about it being your child or other loved one. It’s sad and scary, and well, I don’t want to think about it either. But I do want to bring attention to the need for research. I want you to think about ways we can cure cancer. I want you to think about it all the time – like those of us who have been faced with it in our daily lives.

But how can we think about it, and act on it, without being overwhelmed by it? After talking with a lot of folks, I think I found a way to shed some positive light on the issue. We’re going to start a sort of gratitude journal, where we can focus on those little moments that are good, that are special because they are so normal. We want you to see how grateful cancer patients and their families are for those little things.

So here’s what I need from you. I need you to start sharing those moments with me, so that Dragon Master Foundation can share them with the world. We’re going to call them #MomentsofMagic . They can be anything you want – as long as it was a moment that was special to you as a cancer warrior, caregiver, loved one or friend. We’d love to share pictures with the stories as well, so send whatever you would like to share to amanda.haddock (at)dragonmasterfoundation.org.

Together, we can focus on the positive. As Dumbledore would say, “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”

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Turn $1 into $5,000!

Dragon Master Foundation

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

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

 

 

 

 

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

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

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

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

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

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

 

Thanks & have a Happy Valentine’s Day!

Plan Ahead in Honor of World Cancer Day

Lessons Learned

Screen Shot 2016-02-04 at 5.35.40 PMIt’s World Cancer Day, a time when lots of people are thinking about prevention and cures. I think it is a very hopeful day, when we can rally together and bring awareness to a disease that plagues our society. I’m completely convinced that we could rid the planet of this disease within our lifetime, and I’m heartened to hear more and more people uttering similar beliefs.

At the moment, though, the disease is at large. We never know who might get it or when. My son was 16 at diagnosis but became an adult (18) while fighting brain cancer. He went from a child that we made decisions for to a young man who should have made his own decisions. But cancer was undermining his decision making process. He struggled to make sense out of things that would have been simple for him a few months earlier. He was smart, but cancer robbed him of his confidence. His own mind played tricks on him, and he wasn’t sure of himself. It was a scary time for all of us, and though he was a technically an adult, we still made decisions for him to the best of our abilities. It’s hard to know what another person truly thinks – even if it is your child or your spouse. You do your best, but it is hard to keep the doubts at bay. The best step to avoid this situation is to be proactive. Make a plan before you need it, and you can be more at ease during life’s most difficult times.

I think most of us have the best of intentions when it comes to getting organized. We even take steps toward doing it. Some sort of filing system for your tax papers. Maybe a safe deposit box for important papers. But there are a lot of legal documents that most of us avoid. Wills. Advance Directives. Stuff that means not only are you an adult, but an adult who might one day die. Scary stuff. But it doesn’t have to be.

I found this really cool article from Everplan that walks you through a lot of those important adult things. It’s relatively painless, and it is super important. I talk to families all the time who spend grueling hours trying to decide what their loved one would have wanted if they could have decided for themselves. Brain cancer frequently steals away the ability to make good decisions – and it happens long before most people are prepared for it. So take a few minutes now, and check out this list. Make it a priority to work on it steadily for a few weeks, and before you know it, you’ll have all those “adult” things behind you.

Here’s the link:

https://www.everplans.com/articles/an-encouraging-to-do-list-for-getting-organized-in-2016?utm_source=Everplans+Newsletter&utm_campaign=11a47ed0c9-Cash_Windfall_Non_Members_1_15_2016&utm_medium=email&utm_term=0_fdb52c78d8-11a47ed0c9-147163513

By the way, I am not endorsing Everplan’s service and this is not an ad for them. I have not tried their service, so you’ll have to make your own decisions about that.

 

Choose Hope

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hope sign

This human existence is a strange thing. Full of ups and downs, it seems like we should all get an equal shot at playing the game. But we don’t. For some of us, the journey ends just as it should be beginning. Bright and shining stars extinguished before their light touches everyone. But what about those of us given the gift of time? What do we do with it?

I want to take a moment today, as sweet Jackson is laid to rest, to talk about hope. For if ever there was a family that knows what it means to hope, it is the Jackson/Beezhold family. Articulate and caring, I met them first online through some Facebook support groups. They knew Jack’s odds, which were not good, but they lived with hope every day. In big and small ways, they filled Jack’s years with life –a lifetime of happiness. It was an unbearably short lifetime, but we could all wish to be loved that much.

It makes me reflect on my blessings – among them, this family that I’ve come to know. It takes true faith to find hope after you are dealt a blow like childhood cancer. To know that life is not perfect, but there are gifts – even in the times of imperfection. Today, I grieve with Jack’s family, but I also hope for everyone still fighting. I hope that they will have great joy in as many moments as they can. I hope that those of us not personally battling disease will see what a gift that is. I hope that we will all be empowered with the knowledge that we can make a major difference in this world – through our attitude and actions. I hope that we will all have the vision to see the blessings instead of the curses.

I hope that we will all take moments for ourselves, but that we will take more moments in service of others. We have been given time to play this game of life. And I think one of the secrets to “winning” is teamwork. I’m sad that we didn’t find a cure in time to help Jackson. But I’m not giving up. I choose hope. We have a great big team of warriors depending on us. The bigger our team, the better our odds of winning. I want to give everyone the chance to play the game for as long as possible. I want us all to die as old people who have been given every chance to grow old gracefully. Some will do amazing things. Some won’t. But wouldn’t it be cool if we were all given the same odds?

Is Empathy Better than Apathy?

Dragon Master Foundation

Apathy

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

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

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

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

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

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

 

Imagine

David's Journey, Dragon Master Foundation

IMG_3572Imagine for a moment that you were diagnosed with cancer. (I pray this is never real for you.) You are sitting with your doctor, and he gives you your treatment options based on what they think might work for you. You’re given the odds based on every other person who has ever had that type of cancer. What would you think?

I have not been diagnosed with cancer, but my son, David, was. As his parent, it was my job (along with his other parents) to choose a course of treatment to give him the best chance at survival and the best quality of life. They told us the odds – that he would probably die within the year. We chose to believe in a better outcome, and so did David. We studied everything we could get our hands on to improve his odds. And we did, but only for a while. David died 20 months after being diagnosed.

His odds were based on every other person who ever had that disease. He should have lived longer because he was young – just 16 at diagnosis. But I know others who were much older and lived much longer. Why? If you were diagnosed, wouldn’t you want to know why some people live longer?

In essence, that is what Dragon Master Foundation is trying to do. We are helping fund a database that will help researchers discover why some patients respond well to a drug and why some don’t. The answers are there…in our DNA. The problem is, most hospitals only have access to a relatively small number of patient records. One hospital alone will never accumulate enough data for true “big data” analytics. Because of the multitude of cancer types and subtypes, even most consortiums don’t really have enough data to see the big picture. And yet, you will see and hear about more consortiums formed all the time. More efforts to amass that kind of data.

You might think that we are just one more effort, but let me tell you why we are different. We aren’t just a consortium. Yes, we do have certain hospitals who have agreed to the strict standards for data collection and sharing. But unlike a traditional consortium, the records being collected are available for researchers at other institutions. Virtually anyone with need can access this data. At this point, there are over 1,400 subjects in the database, but that number is growing every day because more people are diagnosed every day.

When a diagnosis comes in your world, do you want statistics based on every other person, or do you want to know what treatment will work for you? Help us build the resource today so that we all have a better chance at survival tomorrow.

P.S.

I am honored to share this picture of Jonny with you all again. You may know that he is on hospice care now. If you would like to send a kind word to his family, you can do so here: https://www.facebook.com/projectteamjonny

Why You Should Care About Research BEFORE You Are Diagnosed

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Cancer Research

I’m still a relative newcomer to the world of cancer. Prior to my son’s diagnosis in 2010, our family had not been affected a lot by cancer, and I thought it was mostly treatable/curable these days. There is certainly a lot of media that would make us think that. Lots of big cancer groups touting the cure rates that have improved over the years. And it’s true, cancer rates have improved, but the treatments are still toxic and cause life-threatening complications during treatment and for years to come. And the most deadly cancers have seen very little, if any, improvement in the last few decades. DIPG, the cancer that killed Neil Armstrong’s daughter in 1962, is still taking the lives of our children every day, and we have virtually no way of stopping it.

So what happens to a patient who has a disease like DIPG, with no known cure or effective treatment? There is usually some treatment – given mostly to aid their comfort. They may choose a clinical trial, but so little is known about this disease that those trials are largely ineffectual so far. How do we bring about change for the children and adults who get a “rare” cancer or disease? This question used to keep me up at night. For the 20 months that my son fought brain cancer, I did everything I could think of to try and push research along faster. Friends and family did fundraisers for those big cancer groups. We visited Senators and Representatives in DC. For the last five years, we’ve continued to work in those same avenues, all while also starting to work on something entirely different.

How do we speed results? Researchers will tell you they need greater access to high quality data. Simple, right? Well, not really. You see most hospital/university systems are not willing to invest in any infrastructure beyond their own. It boils down to a return on the investment. How do they justify spending money on an infrastructure that helps what is, in essence, their competitors?

When this idea first came to us, we thought we would literally be building a server farm somewhere in Western Kansas to give researchers access to the kind of data they needed. It turns out, we didn’t have to do that. Why? Because there were lots of other people having the same thoughts as us.

Researchers at multiple institutions who wanted to share, but didn’t know how. Foundations who were willing to fund projects that would collect high quality data. Patients and families who demanded that their information be released to a wider audience. When we formed Dragon Master Foundation, we did it because we thought we were going to have to go it alone. Before we even had our 501(c)(3) paperwork in hand from the government, we had established a partnership with the Children’s Brain Tumor Tissue Consortium. At the time, that was 4 hospitals. It has now grown to 7 hospitals with several more in the on-boarding process. There are a number of foundations supporting various aspects of the sharing process. The database is built. A pilot is underway and is nearly ready to be pushed into the web for greater access to the research community. Not just at those 7 hospitals, but there will be access for anyone who wants to do research. This is not a group of hospitals who have agreed to share information with each other. It’s a group who have agreed to share information with the world. It’s patients and families who have agreed to let their information help find a cure. It’s administrators who take the time to make sure the data is entered completely and accurately so we can garner the very best results. It’s foundations who have taken ownership of the process and are funding the process to bring this to life.

I look back on all that I’ve written here, and I know I have only scratched the surface of what I want to tell you… what you need to know about how important this is. I truly believe this database is the single most important thing in medical science right now. Everyone likes to use the buzz words “precision medicine”, but that is a largely useless term without the data to back it up. This is that kind of data. This data will change the world. Not maybe. WILL. It can do it soon. Or it can do it in 15 years. I want to do it now. Right now. Because right now, a little boy named Ryan is so swollen from steroids that his friends can no longer recognize him. And though he is battling to survive, his best shot is a miracle.

Right now, little Jonny stays home while his twin, Jacky, goes to school because there is nothing further they can do for him. Right now, Candace and Kaitlyn struggle to go to work every day because in spite of debilitating headaches, they have to make a living. Right now, Tom, who was flying jets just a few months ago, is learning how to walk again in hopes that they will find a way to keep his tumor from growing. Out of these people, I only knew one prior to their diagnosis, but I can tell you it came completely out of the blue to every single one of them. And when it happens in your family, you wonder why you didn’t get involved sooner. You’ll wonder if you had, would it have made a difference for you loved one? If you had pushed for innovation sooner, would they suffer less? Would they still be here?

What would it be like, for example, if I had asked myself these questions 10 years ago, instead of five? Would David still be here? Let me just tell you that these are not questions you want to live with. We supported charities – lots of them – before David got sick. I’m very proud of the work I did with the Cal-Diego Paralyzed Veterans Association. We gave to Make-A-Wish, and donated to so many other causes that I will never run out of mailing labels for as long as I live. Those donations made an impact. I know that lives were changed because of it. But none of that comes close to this. This has the potential to touch nearly every life in America. Data like this, that will exist in a perpetual database, will help people now and into the foreseeable future. It could easily help researchers make discoveries about diseases other than cancer. We could literally change the world! But we can’t do it alone. We need your help. We need you to make a financial commitment if you can. I feel like one of those old-time preachers passing the collection plate, but it’s too important for me not to ask you directly. Please help. Please do it so we can start telling these families that there really is some hope.

We have a cool new partner that makes online donating faster and easier than before. It also helps you keep track of what we are doing and interact with people who care about finding a cure. If you would like to make a donation to help us launch this new platform, go here: https://we2o.org/charity/dragon-master-foundation

That company also lets employees donate their leave time, so if that is something you are interested in, please let us know. We can start a conversation with your company about making that a benefit for everyone.