Who’s Really the Enemy Here?

David's Journey, Dragon Master Foundation, Uncategorized

hawking

When someone you love is diagnosed with a terminal illness, the gut reaction is to attack that disease. That’s certainly how we felt when David was diagnosed, and our initial efforts were focused on ending Glioblastoma (GBM) because that was the type of tumor David had. We were not involved in the world of research, and that seemed the most logical  course of action to us. To strike back at the thing that struck at us.

We thought we knew how to help. As we learned more, we realized that we needed to help find cures for brain cancer as a group of cancers because there is a lot that can be learned by studying them together. We also felt like we needed to help that community as a whole because they are so underserved. A broader goal brought us into contact with many more researchers, and many more ideas.

We were energized by some of the sharpest minds in research, and realized that the kind of analytics we wanted to do are really best empowered by studying all types of cancer, and even other diseases, in tandem. The most cutting-edge research points to cancer being mutations in genes and studying the mutations, regardless of the starting point in the body, is leading to new research pathways.
Cancer is a disease that has plagued humanity for generations. In all that time, we have mostly dealt with it as a disease of a particular body part. We now know that it is much more complicated than that, and we need to empower researchers to follow many pathways.
David had a bright and curious mind. For him, helping researchers was never really about helping himself. It was always about helping other people and solving the puzzle of cancer. Brain cancer is the beast that took David from us, and we would love to see that disease wiped out for good. But what if the answer to curing brain cancer lies in pancreatic cancer research? What if the answers we seek lie in the cure for  fibrodysplasia ossificans progressive? (That’s a super interesting rare disease that has been connected to the brain cancer DIPG. You can learn more about that here.)
It’s human nature to strike back at the thing that hits you. But do we really even know what that thing is? Dragon Master Foundation is focused on putting all of a patient’s information into one giant research platform. It’s a database, yes, but it is also a place where researchers can collaborate and gain access to biosamples. It has a patient’s full genomic data, but it also has their treatment path over time. It gives us a more complete picture of what is going on with the patient and what treatments are successful. It can help us understand why certain patients do well on a clinical trial and some don’t. And possibly most important, it looks at patients across many disease types to compare and contrast things like gene mutations. Instead of having one small group of researchers working on a problem, this platform makes it possible for any researcher, anywhere on the planet, to work on high quality data to help find cures.
Tomorrow is #GivingTuesday. It’s a time when people around the world put a few of their hard-earned dollars into the hands of a charity that they hope can change the world. I’m convinced that Dragon Master Foundation is one of the most deserving places you could make your donation. Here are a few of the reasons why:
  • No one at Dragon Master Foundation gets paid.
  • We direct all of our research dollars directly into this one project that is already speeding research. (One doctor said that it shaved a month and a half off of his typical tissue request workflow!)
  • This project has the potential to help patients with cancer as well as a host of other medical conditions.
  • Through this portal, research can be done on both adult and pediatric populations.
  • It was listed as part of Vice President Biden’s Cancer Moonshot Fact Sheet.
  • It is open access – meaning researchers don’t have to be part of a special consortium to access the data.
  • It is cloud based – meaning the researchers don’t have to download petabytes of data that can take days to acquire. It also means they are not dependent on their hospital’s computational power because they can do their work directly in the web.
Dragon Master Foundation isn’t the only foundation funding this. As of right now, there are 13 hospitals and more than twice as many foundations putting resources toward this project. However, many of them have a specific disease focus where they direct their resources. By donating through Dragon Master Foundation, you can be assured that your donation will go to building the infrastructure that will help all patients, all researchers. This isn’t just a gift to help researchers. This is a gift for mankind. This #GivingTuesday, you can  be part of the generation that changes the world.

Christmas Parade

Uncategorized

Last night was the Christmas Parade in Fredericksburg, VA. It’s a big deal in a small town, and Spotless Mind was excited to be invited to walk with a local business’ entry. (A big thanks to Brandonbilt Foundations and Concrete Construction!)

The kids were excited to participate, but also kind of bummed that they weren’t allowed to throw out candy or anything like that. They made their banners and did their planning, and somewhere along the way, they decided to wear their “Hug Like David” t-shirts. I’m not sure if this next part was a conscious decision or if it happened spontaneously, but when the parade started, our “Hug Like David” kids started hugging people along the route.

I’m told that the crowd started looking for our group to get a hug. They said it was amazing and that it really felt like Christmas with all that love.

I wish I had been there to see it first hand, but I wasn’t. Neither was Catherine, the Spotless Mind president from last year. And that, to me, is a pretty big deal. That this group decided to stay a group and continue doing this work in memory of David and in honor of those still in the fight.

I hope each of you get the chance to “Hug Like David” today.

20121202-102708.jpg

20121202-102747.jpg

Letting Go

Uncategorized

I’ve put off writing this all day because somehow committing the words to page makes it more real. Late last night, our darling young man was called home to Jesus.

In the last few days, David had been less and less with us, slowly withdrawing into the world beyond this one. I thought he would just drift away from us without a real goodbye, and I was trying to come to grips with that. I should have known that David wouldn’t go out “quietly”.

Yesterday morning, after a few days of little, if any response, David started communicating with us again. He couldn’t really talk, but he could make sounds, and because his personality was always larger than life, we could easily identify a lot of what he was trying to tell us. He had a moment with each of his visitors yesterday, which included my parents, Austin, and his step sister.

His final moments were spent in the company of all four of his parents, surrounded by words of love. We had Celtic Women playing softly in the background in an effort to make him happy and relaxed.

There’s a lot I’d still like to share with the world about David. His earthly life may be over but his message still needs to be told. I’m afraid I’m a little too upset right now to be able to even attempt to do him justice, so I’m not going to try.

There have been many sweet notes posted on Facebook today, including one from Austin that spoke to their sweet relationship. I ask that prayers continue for her and his step siblings as they grapple with the loss of their brother. We know he is in a better place, but it is so sad to be the ones left behind.

For those of you who would like the details, the viewing will be Monday, May 14th from 5-8 pm. The funeral service will be outside at 3pm on Tuesday, May 15th at Laurel Hill Funeral Home.

In lieu of flowers, memorial donations can be made to:
Accelerate Brain Cancer Cure

Please note that it is in memory of David Pearson. It is Brain Cancer Awareness Month, and I think there is no better way to get the word out than by celebrating the life of David.