Why You Should Care About Research BEFORE You Are Diagnosed


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.

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