<---- That's my Cure Crohn's bracelet that Tristan Biesecker at www.mycrohnsportal.com sent me for free. I suspect Tristan is, much like myself, interested in the science behind Crohn's disease. No doubt there is a genetic element as my genes are all screwed up, proven by a Prometheus test that logged the ones I was missing. Quite an expensive test, but I was lucky. My doc picked me for one of his freebees. I understand insurance companies haven't yet approved the test even though it can inform docs of how the disease may progress. Again, I was not lucky.
BUT! There are people like Tristan out there that have far more patience than me and he gets into the nitty-gritty of diet and science. I do support the theory that diet plays an important part in managing the symptoms of Crohn's disease. Give me a tablespoon of mayo and watch me rush off to the restroom. His experience with diet was also much like mine. I ended up sicker than when I started.
The news today is, My Crohn's Portal has been working behind the scenes to morph into something greater than what the website was traditionally for which was a scientific/personal blog on his journey with Crohn's disease. Now, Tristan is adding a new program (well, several actually) to his website one of which is called Project REACH.
In his own words:
Hello fellow My Crohn's Portal members! As we stated earlier, we have some announcements to make now that we have broken 1,000 likes on Facebook. Here we go.
Where We Are
First, let us start by thanking all of you for being a part of the community. In just a few months we have amassed over 3,300 members, and hundreds more join every week. As you may have seen, the wristband map shows we have members in 37 countries wearing our Cure Crohn's wristbands. We encourage you to take a look at the wristband map after you read the rest of this post and to check out our Facebook page to view some of the great pictures people have posted. You can find the live wristband map here: www.mycrohnsporal.com/crohns-diease/awareness/wristbands/
My Crohn's Portal began as a blogging platform for Tristan Biesecker. Behind the scenes, however, we (his scientific team) are very pleased to announce that it is growing into something much larger. Over the past three months we have been working extremely hard to expand our infrastructure to support a global IBD effort. We will be launching the next iteration of My Crohn's Portal in the coming weeks:
My Crohn's Portal 3
Project REACH Under MCP 3 will be one large umbrella initiative called project REACH. REACH stands for research, engagement, awareness, cure, and help. We intend to provide platforms for each one of the terms that REACH stands for; we will be rolling these out in stages and we will keep you posted on their progress.
As some of you may know, for the past 10 years we have been working on advanced Crohn's disease research. We were among the first to know many years ago that bacteria play an important role in Crohn's disease, as well as the genetic components that are now discussed ubiquitously in the IBD media. Believe it or not, that information has been known in the core research community for many years. We intend to bring that research to you, the average Crohnie, without the typical lag time between discovery and public announcement. It is often difficult to find reliable information that is distilled down to a form that doesn't require years of study to understand; this is precisely what we are going to supply, among other things.
My Crohn's Portal monitors the world of research and presents that to the average Crohnie in a clear form. We are going to focus on engagement and awareness. We are pleased to announce that with the release of MCP 3 we are going to be launching a global IBD awareness shop. It is our goal to have our awareness gear worn by people all over the world, and we are working hard to make that happen.
Our items have been designed to be appealing to wear and to facilitate our efforts to increase engagement and educate people about IBD. We believe there is more that you can do with awareness apparel and we think that you will understand our approach once you see the designs very soon.
If you are a reseller or just want to sell our items in your shop to help the awareness campaign, then we have good news for you! We will offer reseller programs that enable organizations to purchase our products at discounted prices in bulk quantites or by contract. More on this soon.
Global Collaboration: IBD Gears
We have put a lot of thought into increasing community engagement in the world of IBD. It turns out to be a harder problem than one might expect. Once you analyze the issue for a while the question ultimately becomes, "How do we have thousands of people working on projects in a coordinated and timely manner, and their efforts actually produce something useful?" We believe, however, that we have come up with a solution that will scale very nicely with more people involved. We are calling this IBD Gears.
The team at My Crohn's Portal are core engineers and researchers. Given our occupational proclivities, we have a tendency to approach problems in a particular manner; typcially, this approach is from an engineering and scientific perspective. We recognize, however, that different perspectives can help shed light on issues that researchers and scientists may miss or not fully understand. Therefore, we are going to give all of you the chance to be involved in solving the problems of the IBD world.
With IBD Gears, you will have the opportunity to participate in projects involving people all over the globe. Instead of waiting for big companies to launch marketing campaigns, or to come up with solutions to problems we all face, My Crohn's Portal is going to help you do just that. These projects will have different components to them; perhaps some are technical while others are more social. You may be offered spots in projects that are aligned with your passions (engineering, social media, journalism, etc.). We will be talking more about IBD Gears in the coming months, but we are very excited about its potential, and we hope you are too!
IBD Gears will hopefully be arrving this fall.
Join Us! Project REACH is a global effort. No matter where you are on the planet, we hope that you will be a part of our mission to change the world of IBD. The more people who join and engage in our system, the quicker we will achieve our goals. More details will be released in the coming weeks, but for now you can help by spreading the word and checking in with us using the hastags #MCPortal and #IBDREACH.
We are going to make a difference. Stay tuned for MCP 3.
- The My Crohn's Portal Team