<a href=”http://www.bloglovin.com/blog/18276993/?claim=5vtdm3xje99″>Follow my blog with Bloglovin</a>
I’m exploring ways to spread the message about open access, big data cancer research.
<a href=”http://www.bloglovin.com/blog/18276993/?claim=5vtdm3xje99″>Follow my blog with Bloglovin</a>
I’m exploring ways to spread the message about open access, big data cancer research.
Today is the halfway point in the Revlon Love is On Challenge. We have raised over $21,000, which far exceeds any online fundraising we have done for Dragon Master Foundation in the past. It shows that we are growing as a foundation and that people are starting to really understand and support our mission. I really wanted us to be at $50,000 by the end of the day today, though. Hitting $50,000 today would mean that we have a guaranteed pitch meeting with Revlon to promote Cavatica — an open access data platform that will dramatically improve the cancer research process. We have until midnight. I haven’t given up hope.
There are literally thousands of people who have the potential to read this message. If each of them donated only $10, we would far exceed our goal. There are many times in this life that we are helpless. We sit and watch as good people die from a disease that seems unstoppable. I’m here to tell you that it is stoppable. We are seeing breakthroughs with precision medicine efforts, but if we want them for everyone we must take action. Precision medicine initiatives are only as good as the data that drives them. You’ve seen the photos. Right now, a family sits with their child knowing there is nothing else to be done. For those of us who have been there, there is nothing we wouldn’t do to keep you from knowing that pain. Wives continue on without their husbands because a nasty beast stole them away right in their prime. Children grow up without mothers because cancer stole them from their family.
This project has the potential to help all of mankind. I don’t expect you to devote your life to it. I know you have jobs and kids and other responsibilities. All I’m asking is that you realize what an amazing opportunity this could be for all of us, and maybe skip that extra meal out this week. Donate two days worth of Starbucks to our cause — TODAY. I promise you we will make the very most out of that donation.
You can donate here: https://www.crowdrise.com/DragonMasterFoundation-Revlon2016
I’ve always liked that word. Bliss. Just saying makes me breathe a little deeper. I’ve liked the word, but I don’t think I truly understood the phrase “ignorance is bliss” until David got sick. I had no idea how lucky I was that I hadn’t had to watch a loved one battle cancer. I had no idea that the word “Momcologist” existed. I had no idea that having my child die from cancer would just be the first in a long line of unspeakable tragedies that I would have a front row seat to watch.
Ignorance can be bliss, but it can also be what holds us back. As humans, we are held back because most of us don’t take the time to learn about disease and the obstacles facing medical researchers. I get it. Really. I was not a big fan of science or math in school, and reading anything other than Harry Potter at bedtime was not on my radar. But while I sat there doing my horrible Hagrid impersonation, a disease was lurking that would steal my son’s life. If someone had told me, I think I would have felt helpless. Cancer is a disease that has plagued the world forever. How could I possibly do anything to stop it?
But something happens to you when your child is threatened. Your bliss is shattered, so you start asking questions. You scream out to the world that it isn’t fair, and you get the echoes of countless other parents as your answer. The power to stop cancer lies within us. Ok, not me, most likely, but within someone. Maybe it will be someone in the oncology/cancer research field. Or maybe it will be some computational biologist or mathematician or astrophysicist. But it won’t happen if we sit by, blissfully ignorant that they need our help. THEY NEED OUR HELP. I don’t care what it is that you do, you can make a difference in the war on cancer.
There is an open access platform called Cavatica that will bring top quality cancer data to the people who want to find cures. It is free for them to see because hospitals and foundations are paying to make it that way. But we are spending our money on building infrastructure – not big marketing campaigns. That’s where you come in.
You are a single flame, but you could be the spark that starts the explostion (all props to Rachel Platten). Please tell people about Cavatica. Tell them that there is a new way to make discoveries for cancer research. Tell them that every type of cancer is important and that everyone deserves a chance to defeat cancer. The beta version is open to cancer researchers right now at Cavatica.org. Let’s make your moment of bliss the moment you hear that they have found a cure.
(Side note: couldn’t find a pic that illustrated my point with people, so this is a shot of my cat looking blissful.)
We are a few days into the Revlon “Love Is On” Campaign, and I’m super proud of our effort so far. For such a new foundation, we are really holding our own! I know a lot of our supporters are not on Facebook, so I wanted to do an update here on what you can get by helping Dragon Master Foundation in our quest to win a million dollars. You know, in case the warm fuzzies aren’t enough.🙂
We announced that we will have a special “thank you” bundle for everyone who donates more than $150, and today, I’m going to tell you what that bundle includes:
You can donate to Dragon Master Foundation for the Love Is On Challenge by going here. You can donate directly to the foundation, or choose one of the team members who are helping us. Better yet, sign up to be on the team and help us spread the word! We need to be in the top 10 group by tomorrow to win the next challenge grant of $5,000, so every little bit today REALLY helps!
Last night we attended the second night of Richard’s class reunion. These are people he’s known for the majority of his life, but I mostly only see them every 5-10 years at these functions. They are a funny, welcoming group, and I enjoy seeing them reminisce. This year, though, one of them told me I was now a “falcon” and referred to Richard as my date.😉
This group of people has been touched by cancer. We are not the only ones with a child in Heaven because the disease. Countless lives have been ended too soon, and others have fought battles that have left them with deep wounds. We were offered words of encouragement throughout the group, and that always has a buoying effect on me. But more than that, last night we got a significant gift.
One of the cancer warriors gave a generous $1,000 to our Love Is On team. I know that it was a meaningful gift from her, and it was received with all the tears and hugs you might expect. And while that was an amazing and significant donation, we recognize that a lot of people can’t give at that level. So I wanted to also tell you about some of the other things that happened that are helping us along the way.
The event committee had extra soda and beer from the event that they donated to Dragon Master Foundation so we can offset the cost of an upcoming event.
A classmate’s wife offered to reach out to her network to tell them about the Love Is On challenge and help us get donations.
People asked about the challenge and what it could mean for the foundation. They asked about Orlando. And I believe the help from that group will continue to grow as the week goes on. These folks have reached the age where many are retiring and looking back on the contributions they’ve made to the world. Kids, grandkids, service to others, challenges overcome … They have a lot to be proud of. We think being a Dragon Master Foundation supporter is an excellent thing to add to that list.
We have a very urgent need for donations over the next few days. We need to be in the top 10 charities by Tuesday in order to receive a $5,000 grant from Revlon. That boost would really help us get to our $50,000 mark much faster. If you can afford $15, we have a cool window cling we can send you. For donations more than $150, you get a whole bundle of goodies including a great, limited edition awareness t-shirt. Please donate today. Any amount over $10 counts toward the contest and it is significant to us.
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.
This week has renewed my faith in humanity. It’s so easy to sit by and watch the world slowly spiral out of control, but it’s really not hard to make it stand still, either. when you are told there is nothing more they can do for you loved one, be it your child, your mother or your husband, your world stops. But only for a moment, and then it starts falling. The more time that passes, the faster it goes. You’re hurtling toward an abyss with nothing to slow you down. With a lot of help, this week, we were able to slow that time down for a family who is so desperately looking for a cure.
Orlando is a sweet 11 year old boy who lives in our hometown. He has two sisters and a brother, and a family who loves him very much. And the local doctors told the family it was time for him to go on hospice. No more options. But that wasn’t acceptable to his mom, Lacy. She kept searching for a way to save Orlando. There are no guarantees in the fight against brain cancer, but she found a treatment that offers Orlando some hope. Some more time. But that treatment was half a country away.
Dr. Santosh Kesari has been working with brain cancer patients for his entire career. From Harvard to UCSD, he has gone where the research took him, searching for better treatments for people with brain cancer, specifically glioblastoma multiforme, which is what Orlando has. In the past few years, he’s had some success with a drug called Everolimus. Everolimus (Afinitor Disperz) got accelerated approval for subependymal giant cell astrocytoma is adults and children in 2012. Afinitor Disperz is the first pediatric formulation to be approved by FDA for the treatment of a tumor that occurs primarily during childhood. (In layman’s terms, astrocytomas turn into glioblastoma multiforme, so that is why this drug is a possibility.)
You can see some of the results Dr. Kesari has had via this article:
I know it seems like something that has been FDA approved since 2012 should be common knowledge, but the 5 year study results haven’t been out that long. (Five year study results: http://www.ncbi.nlm.nih.gov/pubmed/26381530) With brain cancer, you really need a doctor who is paying attention to the very latest studies to try and gain as much quality time for the patient as possible. Dr. Kesari isn’t just paying attention – he’s one of the ones paving the way.
But finding a possible treatment is just the first step. Dr. Kesari needs to evaluate Orlando in person to make sure this is indeed a viable treatment option for him. (All other labs and scans would indicate that it is.)
With brain cancer, the clock is such an enemy, but treatments like this give us real reason for hope. On Orlando’s behalf, we reached out to the community for help to get him and his mom to California to see Dr. Kesari. Thanks to Brad Pistotnik Law and a very generous offer of the use of a jet, we will be able to get Orlando and his mom to Santa Monica on Monday. We found out yesterday that there is enough room for Orlando’s sister to go, too, and we are so happy that she will be able to be there and give him moral support. They are only 15 months apart, and they are very close.
There will be additional expenses for this family while they are split up trying to care for Orlando and his siblings. Dad is staying in Kansas with the two youngest children, but he works so they need additional childcare. Orlando’s meals will be at the hospital, but there is no coverage for his mom and sister for food. Also, this is an “out of network” hospital, so there will be higher medical bills.
Dragon Master Foundation recently adopted a change in our bylaws to be able to help families in this situation. A brain cancer patient can be sponsored by a person or community, and donations can be raised to directly help that person. The first person to benefit from this new program is Orlando. If you would like to help the family with expenses, you can text the word “cancer” to 91999.
If you can’t help financially, please share this story and join our Thunderclap, an effort to help win a million dollars for cancer research. You can join the Thunderclap here: https://www.thunderclap.it/projects/44920-love-is-on-to-conquer-cancer
That’s not a rhetorical question. I want you to stop and think for a moment about how cancer has impacted your life. Did it attack you personally? Maybe it stole away a loved one? Perhaps you haven’t lost someone close to the disease, but it still attacked them. It made them miserable for months, and filled their life with worry and dread. Will it come back? Who will it strike next? Maybe you’ll comment below with the answer, maybe just thinking about it will just help you understand what I’m about to say.
Cancer makes me sad every day. I’ve never had it. But my son, David, did. My handsome, happy, quirky son was struck with brain cancer at only 16. He was positive, we had thousands praying, we had the best doctors, and he still died. There won’t be a day of my life that isn’t tinged with sadness because of that, but that is not my story. It is not my son’s story. People think that we work on cancer research because it makes us feel like we are keeping David’s memory alive. That’s wrong. David’s memory would live on in our minds and hearts no matter what we did. If I never forced myself out of bed in the morning, David would still be there. Just like our other children, he is still everything to us.
The reason we work so hard for cancer research is because David isn’t here to do it. Cancer took one of the best people I’ve ever met, and I know he wouldn’t have stopped trying to help people. He isn’t here, so I have to work twice as hard. That was my motivation in the beginning, but even that has changed. Like a person who has glimpsed Heaven, I’ve had a peek at what the future holds for us if we collaborate, and I’m hooked. It’s the most powerful feeling — to know that you might be able to play some small part in helping others be spared the pain that you have known.
I’ve lost track of the number of researchers we’ve talked to over the last six years. The recurring theme was that they needed better technology, more open access data, and faster access to biosamples and electronic records. We’ve found partnerships with these visionaries who want to break down the data silos and really speed cancer research. The ball is starting to roll, but there is no smooth path to follow. There are bumps and obstacles along the way. But the thing about balls is, they are more likely to keep rolling. These researchers are the same way. So are the administrators and the doctors and the patients who are all working together on this effort. It’s hard to put a number on how many are a part of this effort, but it involves top children’s hospitals all around the U.S. and is beginning to stretch beyond our borders. (Thank you, Italy!)
We want to smooth the path by giving collaborative scientists a place to work where they can share their data and make faster discoveries. The beta version of this project is called Cavatica, and it is live now. Today. It is real, and an alpha user of the platform said that it shaved a month and a half off of a process that would normally take two months. From two months to two weeks! We’ve started, but the platform needs to be so much bigger to help us find the answers we seek. So this is an appeal.
If you believe that open access data is important for clinical research…
If you believe that we need to be able to track patients through multiple trials to learn why treatments work or they fail…
If you believe that we might learn something by comparing adults and children in the same database…
If you believe we might learn something by comparing brain cancer to fibrodysplasia ossificans progressiva or other rare diseases…
If you believe that big data analytics can save valuable research time and help us narrow down causes and treatments faster…
Then please get involved today. Dragon Master Foundation has a chance to win a million dollars for cancer research in the Revlon Love Is On Challenge starting on September 14th. If you haven’t heard of us before, don’t panic. We’re only 3 years old, but we’ve already won a White House award and been invited to participate in Vice President Biden’s Cancer Moonshot Summit. Dragon Master Foundation is a 501(c)(3) with no paid staff. We are just a group of volunteers trying to give researchers what they need to find the cures we all want so desperately. Here’s how you can help:
People literally laughed at us when we told them that we wanted to build a research platform where cancer researchers could share data and work together. No one is laughing now. Cancer could have just made us sad. Instead, it motivated us to help others. We hope you will join us.
Like a rollercoaster as the last car eases over the top of the hill, we are hurtling forward after what felt like slow movement. The projects that we have been working on for the last three years are picking up speed. We have said all along that the way to change cancer research is through greater collaboration, and that message was loud and clear at this month’s Cancer Moonshot Summit at Howard University. There was an extremely diverse group of cancer research advocates brought together to hear Vice President Biden’s ideas and then work together to share our own ideas for how to bring about 10 years worth of change in the next five years. I think that idea might have scared some people, but we have already seen amazing advances using the Cavatica platform, so we know that kind of rapid improvement is possible.
I know that there were many events held around the country, and we even hosted an event at WSU in Wichita, but many of you may not have had a chance to really see what happened during the day of the Summit. I wanted to give you my perspective on the day, and I hope it fills you with the kind of hope I have for the future of cancer and disease research.
We started the morning with American icon Carol Burnett. She was delightful, as always, and the fact that she took the time to be there with us spoke volumes about how amazing this effort really is. Vice President Biden shared some of his frustration with us over costs and lack of progress, and we learned about some of the goals of the Cancer Moonshot initiative from Dr. Danielle Carnival, Chief of Staff and Senior Policy Director of the Cancer Moonshot Task Force.
There were several other speakers, all of whom underscored the need for this important gathering and continuing effort by the community. We broke into work sessions for the morning, and I was placed in the “Solving the Technical Challenges to Unleash the Power of Data” group. That was no big surprise!
I was incredibly humbled by the people in my workgroup. From industry veterans who have been working on making genomic data available like Warren Kibbe to bright, young innovators like Daniel Wagner who are challenging the way we look at and access the data. It was a fast-paced discussion that resulted in some great ideas.
We all returned to the general session for lunch where we could share ideas in a less-formatted way. I had the great pleasure of sitting with Dr. Charles Powell from the Icahn School of Medicine at Mount Sinai. Our discussions covered everything from rare forms of Mesothelioma to the latest imaging technologies. There’s nothing quite like watching a doctor get a look at new technology that will help him do his job more effectively, and I had the pleasure of watching that at lunch. It is simply amazing what we are gaining access to through new technologies. We got a great look at how Siemen’s is turning analog scans into digital data that can be used for comparative analytics. That will be great in Cavatica!
After lunch, we heard some great speakers who spoke about collaboration. I think some of these were available on the live broadcasts, and they are available for viewing here:
Then we were off to our afternoon workgroup sessions. My session was on “Data: To What End?” and our insightful speaker to start the session was none other than David Agus.
We talked about existing collaborations, and I finally had a chance to mention Cavatica, the sharing platform we have been funding. The attendees seemed a little stunned that we already have 10 hospitals not only sharing digital data, but biosamples as well. There was still some sentiment among event attendees that it would be hard to get scientists to share their pre-publication data, but the doctors at the 10 Cavatica institutions are truly putting children, and indeed all humans, first. This level of collaboration may be unprecedented, but it is the wave of the future and that was evident from the number of people looking to learn more about our platform. I was so honored to be able to share about the many hospitals and nonprofits who have come together to build this amazing resource. I believe it could be the model by which all future research is done.
After a pretty exhilarating working group, we returned to the main hall to hear Greg Simon, Executive Director of the Cancer Moonshot. Dr. Adam Resnick and I got to speak with him for a few minutes after the event was over, and I felt like he was truly trying to pull together all the resources he can to make the end of cancer a reality in our lifetime.
The event ended with Dr. Biden and the VP Biden speaking to the crowd and asking for a prolonged commitment to working together for cures. I believe we have that commitment from everyone that attended this important event.
We returned home to find out that we have been accepted into the Revlon “Love Is On” Challenge. This is an amazing opportunity, not only to raise much needed funding for the research platform, but also to raise awareness for the platform and explain how it can improve research around the world. You’ll be hearing a lot from us about this, but there are two things you can do right now to make a huge difference:
The day is finally here, and I am so excited! Today is the day the beta version of Cavatica launches to the cancer research world. A dream we had almost three years ago is coming true today. It’s not done. Technically, it will never be done. It will always be adding new patients and more information. Putting that aside, it isn’t as “done” as we want it to be. There is more functionality to add. There is plenty of DNA sequencing yet to be completed. But today, there is a pretty awesome database that is already unlike anything else cancer researchers have had access to before.
If you know a doctor or researcher, please tell them about this awesome resource. We will continue to build it out and make it better, but I think they will be blown away – even right now. (Say those last three words in your best Southern accent. That’s the only way to truly give them the emphasis they deserve.)
Here is the official press release:
The Children’s Brain Tumor Tissue Consortium (CBTTC) and the Pacific Pediatric NeuroOncology Consortium (PNOC) conclude Brain Cancer Awareness Month of May with the announcement of the Beta launch of Cavatica, a new cloud-based environment for securely storing, sharing and analyzing large volumes of pediatric brain tumor genomics data.
Cavatica will, for the first time, allow doctors, researchers and data scientists unparalleled access to pediatric brain tumor genomic data paired with a suite of analysis tools in a cloud computing environment that enables scalable, faster and more robust research. Upon its full release, Cavatica will host the largest standardized, integrated, and quality-controlled genomic database of pediatric brain cancer genomic data.
Working with Seven Bridges, a biomedical data analysis company, the eight CBTTC site members and 15 member hospitals of PNOC are further fulfilling their commitment earlier this year to the White House Precision Medicine Initiative (PMI) with the launch of the Beta version of Cavatica being announced today. The Beta release will be open for subscribed end-user input and will be iteratively enhanced by ongoing implementation of advanced platform features and deposition of additional data sets over the coming months. These datasets will include additional pediatric cancer supporting pan-cancer pediatric data analysis in partnership with additional consortia. including the SU2C-St. Baldrick’s Pediatric Cancer Dream Team.
Sign up for access to the Beta release of Cavatica is available for researchers and data scientists by going to cavatica.org.
For more information or to schedule an interview, please contact the CBTTC at CBTTCadmin@email.chop.edu