3 Changes Coming To Clinical Trials

Lessons Learned, Uncategorized

Clinical Trial Changes

If you have a “rare” cancer that doesn’t have a great standard of care, chances are you will be offered a clinical trial. To the general public (which is who we all are before that diagnosis is presented) clinical trials sound like a scary thing. To a cancer patient being told there is no cure, a clinical trial is a lifeline being tossed in a stormy sea. IF you catch it, it MIGHT help save your life.

So how do you pick a clinical trial? Well, first you have to find one that you qualify for. We’re going to assume that you have a doctor who is really helping you and is presenting you with some choices. So you have a couple of clinical trials and the “standard of care” to choose from. How do you decide? Right now, it’s a guessing game, but all of that will be changing rapidly as technology and open access data become more commonplace in the process.

  1. You will have more concrete data to help make decisions. I have seen some pretty impressive technology being developed by Clalit Research Institute in Israel that will help a doctor walk through a list of weighted questions with a patient that will help them make this difficult decision. (That program was developed using data made available from a clinical trial, and as more data becomes open access, I think we can expect to see more applications like this developed.) Each patient will be able to rate a list of possible side effects and based on their feedback, an algorithm will provide guidance on particular trials.
  2. You will know more about what “successful” patients look like. As data begins to become collected in one place, it is easier to compare patients on a genomic level. Researchers will be able to compile profiles of successful patients to help determine who has the greatest chance of success on a trial. My son participated in a clinical trial where one patient was doing really well. We had no idea if David would have the same results because there was very little data to tell us why the first patient was successful.
  3. The system will start to find you. Right now, clinical trials are found largely by patients and doctors sifting through websites like clinicaltrials.gov to find possible trials. In the future, doctors will enter your information into the computer, and then you will be pre-qualified based on your exact diagnosis and personal information. The computer will then present a list of potential trials that you can choose from.

This all might sound a little too good to be true, but the fact is, the infrastructure is already in place. Cavatica.org is an open access research platform that Dragon Master Foundation and others have been funding for more than three years now. It houses a patient’s full genome and biosamples from the patient, and sometimes the patient’s parents. It also links to the patient’s clinical records so we can have a longitudinal view of that patient. I believe it is the single most complete picture of a patient you can get, and we are working hard to make it available to everyone. (At the moment, it is largely working with pediatric brain cancer data, but the platform is built to expand as funding becomes available.)

Data like this can take a lot of the fear and guessing out of treatment, and it should lead us to more successful treatments and cures. We are on the cusp of a meaningful shift in cancer care, and I’m excited for this to start really impacting patients lives.

What is Your Field of Dreams?

Uncategorized

Field of DreamsIt 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.

 

Who’s Really the Enemy Here?

David's Journey, Dragon Master Foundation, Uncategorized

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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.

The Top 9 Things You Need to Know When Your Child is Diagnosed With Cancer

David's Journey, Dragon Master Foundation, Uncategorized

carpeWhen David was diagnosed at 16, he was the first person in my immediate family to have a cancer diagnosis. We were shell shocked, to say the least. To be told that your seemingly healthy teen who had a bad headache is going to die… well, nothing prepares you for that. What happens next, though, is something I very much hope we can help parents prepare for.

David went to heaven four years ago, but we have stayed very active in the brain tumor community. It has been a huge part of my life for the last six years. (He was diagnosed in 2010.) I’ve learned a lot since then, some of it while David was in treatment, and some of it after he passed. All of it is information that I would rather forget, but it is important for parents like me to share their journeys so that those who follow after us can have a smoother path.

So here it goes, my top 9 tips for parents who’ve just heard that their child has cancer:

1. GET A SECOND OPINION. (Sorry for the all caps there, but really, this is important.) I don’t care that your doctor has been your family’s doctor for the last 3 decades. I don’t care if you are at one of the top hospitals in the country. Get a second opinion. Doctors are humans, and a lot of what happens in cancer treatments is up to their judgement. You may find that you don’t want to be on the path that they recommend. That isn’t a criticism of them. People are different. Paths are different. You almost always have to talk to more than one institution to know what all of your options are.

2. Do your research. Over and over again, I talk to families who say, “Well, our doctor said it is a ___ and we should do ___.” Then they just do it. We’ve been trained to honor medical professionals and trust their judgement. That’s not a bad thing. But being led around like a blind sheep can lead you into a treatment path that isn’t right for you or your child. When you are given the diagnosis, look it up. Start with major websites that can give you reliable information. A really good place to start is at https://www.cancer.gov/types

From there, look for foundations that specialize in the type of cancer that your child has. Since David had brain cancer, I can tell you that the sites I found useful were:

http://abc2.org/guidance/find-care – to find out which hospitals specialize in brain cancer – more on this later.

https://endbraincancer.org/we-can-help/ – to get guidance on what your next step should be. At the time I sought their advice, they were very frank about the type of testing they recommended and what to look for in a doctor, including referring me to a Neuro Oncologist.

3. If at all possible, go to a hospital that has a brain tumor team. ABC2.org only lists hospitals with a dedicated brain tumor team. The world of brain cancer research was virtually stagnant for many years, but in the recent couple of years, discoveries are being made very rapidly.  I don’t think it is practical to expect a doctor that deals with many types of cancer  to stay on top of every new treatment coming down the pike. Most will wait for the “tried and true” treatments before they change their recommendations. Brain cancer patients frequently don’t have that kind of time. Cutting edge treatments could mean the difference between life (or at least extended life) and death.

4. Ask every question you have. Write them down between appointments and don’t be shy about going through your list. The medical staff is there to help you and your child and the first step of that is making sure you understand what is going on.

5. Don’t be afraid to “fire” your doctor. I know that isn’t going to make me very popular with some folks, but here’s the deal. This is the single most stressful thing you will ever go through. You need to know that the doctor is 100% on your side and will fight for your child. If they ever make you feel like you are wasting their time, or your child doesn’t deserve treatment, move on.

6. Seek help. If you have found a doctor you like, but they are far away, ask for help. There are many foundations that fund travel and related expenses. Hospitals themselves sometimes have funds or auxiliary groups who can assist you. Crowdfunding websites help people raise money all the time for just this reason. You aren’t a slacker if you need help paying for all of this. Treatment is expensive. Time away from work means you have less money than normal. Going to doctor’s appointments means you need extra daycare, pet care, home care. It adds up. You can find a list of resources for brain cancer patients at http://www.dragonmasterfoundation.org. (Full disclosure: I’m President of that foundation.)

7. Make a Plan B. For everything. You may have a reliable vehicle, but what happens if your transmission blows? You have a friend picking up your other kids from school, but what happens when they get the flu? Most likely, you have people offering to help you, but they don’t really know what to help with. Get them involved in your plan B.

8. Make a treatment Plan B. I could have included this above, but this is super important. If your child has an aggressive cancer or one that has a high probability of recurrence, ask your doctor to tell you what the next line of treatment is. Time after time, people are lulled into a sense of security because treatment is going well, and the BAM! The cancer comes back. Everyone wants to believe the treatment will work, and if it fails, you have that same shock that came with diagnosis. Knowing what the next possible treatment is can really help you feel more prepared.

Side note: We were blindsided when David’s cancer spread. He had been on a clinical trial and was doing so well that his results were presented at a conference. We just knew he was going to beat his cancer. When it spread, we were kicked off the clinical trial and had to scramble to figure out what options were available for him.

9. Trust yourself. All of the tips above are for families who are prepared for an aggressive battle. However, not every family chooses that path. We were fortunate because David was a teenager and could tell us his wishes for treatment. Most parents are dealing with younger kids who may or may not understand the repercussions of treatment. We had an amazing neuro oncologist who would always lay out possible treatment options to us and the last choice was always, “or you can do nothing.” David had glioblastoma multiforme, and even now, six years later, there are no easy answers for that type of cancer. Brain cancer is a tricky, nasty beast. If there were one thing that was certain to work, I would recommend it, even if it made the child feel bad for a while. After all, what is six months of feeling bad compared to the potential 77 years of life lost when a child dies from cancer? But with brain cancer, there are no guarantees. Heck, for the aggressive cancers, there is very little hope. The families that push forward with treatment do so because it feels right for them, and frequently, because they want to help other people.

David was pretty adamant about helping others. His tissue was donated to research, and it is now part of an open access database that is empowering research around the globe. (This is also a project funded in part by Dragon Master Foundation. For more info on that, go to Cavatica.org.) It was a heart-breaking journey, but it was not in vain. I know that David would be thrilled to know that researchers are sharing data and working around the clock. We don’t know the answers yet, but I have every confidence that they are on the horizon.

I used to preface my help to people by saying “I’m JUST a mom…” because in the world of cancer research, I don’t want to come across as a doctor or researcher. However, my hard earned “momcology” degree is valuable, and I’m moving forward with a sense of purpose that my message is important and needs to be heard. Do you have tips you’d like to share for newly diagnosed patients? Please share them in the comments!

How do you answer the hard questions?

Lessons Learned

Whenever I talk to a family about brain cancer, I tell them they can ask me anything. Normally they ask me sensitive questions about the end of life or navigating treatment. But sometimes, tougher questions come out. The toughest one is “how do you go on without your son?” There are many answers to this question. First, would be that my other family members need me. But second would be that my son would want me to be there for these people. It doesn’t make it any less bone-crushingly sad. On the contrary, walking through hell with these families is horrific and hard. It’s been six years since we heard the words brain cancer, a little more than four since David was taken from us. And while many point to the successes of the foundation and the progress in research that we’ve helped with, I can’t see that. All I see is the next person in treatment with no clear treatment path. I’ve been a fairly selfish person for most of my life but now all I see is other people’s need. David always had that sight so maybe he passed some of it along. 

Right now, somewhere a family is agonizing over their loved one’s last breaths. Right now, somewhere a family is hearing that the diagnosis is terminal. I know there will always be freak accidents that steal our loved ones away, but cancer isn’t like that. It’s a disease that we are on the verge of finding cures for, but each day that passes steals away another life. 

People struggle with the meaning of life, but I know that the thing that gives my life purpose is making the way easier for others. That used to be through simple things like doing my job well or making lunch for a teacher at school. Now it is by helping push scientific research forward. And I can do that even though I made a C in Mrs. Coley’s Chemistry class. And you can do it, no matter what your background is. We all have power. We all have a voice. Let’s use it to end cancer now. Right now.

Where Does the Money Go?

Dragon Master Foundation, Uncategorized

IMG_7501

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!

#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!

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