What's New

It's been quite some time since I have posted an update to the main page.  The site has been up and running for 1 year and 1 month and the community now numbers well over 200 and is growing every day.  

Anyway, I have some exciting news about the site.  Private messaging support has been added for registered users!  This is a feature that several people have asked for.  This should allow people to communicate information they don't want to share in the forums.  As always, the forums are private access for registered users, but the private messaging feature adds another way to contact fellow community members.

Some useful information about how the system works:

  • You must be logged into access the private messaging system.  Once logged in, you will see a link in the menu bar for "Messages."  This link will take you to your inbox.
  • By default, email notification is disabled.  It can be enabled through the settings link at the bottom of the messaging page.  For the sake of privacy, the content of the private messages will not be emailed, you must log in to read your messages.
  • You can send messages to a user directly from the forum by clicking on the text bubble below the user's name.
  • Email to hotmail.com, outlook.com and other mail hosts run by Microsoft do not work properly, if you don't seem to be getting email notification, this may be why.
  • If you are not yet registered, remember, registration is free and gives you access to the forums and private messaging system.

For questions or comments about the private messaging system, please discuss in the forum: Private Messaging

 

Wow, it's been way too long since the last update.  In July, we silently celebrated 6 months since going live back in January earlier this year.  I am happy to report that we continue to grow the community and we are approaching 150 users.  The forum activity is also steadily increasing.  All of this makes me very happy to see, Anti-MAP.org exists to help people interested in learning more about Mycobactrium Avium susp paratuberculosis (MAP) and connecting with others that share the same hope.

 

Symposium Update

What has been particularly exciting was the MAP Research Symposium on August 16th in Chicago.  A great many thanks to the Anti-MAP community members, irishgal and JaxMom, among others, that worked so hard to make it happen.  The list of speakers was incredible:

  • John Aiken
  • Dr. William Chamberlin
  • Dr. Amy Herman-Taylor
  • Patrick McLean
  • Dr. Michael T. Collins
  • And an unannounced visit by Dr. David Rubin

 

Every presentation was filled with exciting and informative information about the current state of MAP research.  The future holds exciting possibilities for an improved understanding of MAP, its detection and treatment.  The videos are just now starting to be posted to The Crohn's Infection site.  You can see them directly here at: http://thecrohnsinfection.org/symposium-information/.  It's exciting that this material is available, especially for all of those that were unable to attend in-person.  

 

Announcement

I am excited to announce that Anti-MAP.org will be collaborating with The Crohn's Infection site.  Both sites share a common goal of disseminating information about MAP and its impact on Crohn's and other diseases.  For those of you that have not visited The Crohn's Infection, it hosts general Crohn's information, the MAP Research Symposium information and videos, as well as presenter blogs, and information about financially supporting the research.  A big thanks to irishgal for setting up this valuable resource for the community with the help of the presenters, a web developer and other volunteers.  Anti-MAP.org will continue to be run as an independent, volunteer run website with independent editorial control hosting both the Anti-MAP community forum and research repository.  We are excited about this collaboration as we see it as a way to both give the community access to unbiased research information and provide a way to put the community directly in touch with those involved in cutting edge MAP research.

 

100 registered users

Wow, there is a lot to highlight in this update.  First off, the website has reached a milestone of 100 registered users in a little over 4.5 months of service.  Welcome everyone and let me know how we can make the site a more useful resource for you all.  You can offer your suggestions in the General Website forum category.  If you haven't yet signed up, now's a good time and you will gain access to the forum area!

Getting started

New this month is a "Getting Started" section of the website that is dedicated to helping those that are new to Crohn's and MAP in particular.  This area of the site starts out with an excellent article, titled: "Grow Your Own Doctor," by community member Judith Lipton and her personal experience with MAP and anti-MAP therapies.  She offers important advice on how to educate yourself and the medical community around you in an effort to find yourself more effective treatments.  Check out the article!

International Symposium

Also, there is more information on the upcoming International Research Symposium this August in the Chicago Area.  This is an important educational and fundraising event to further the research around MAP and its detection and treatment.  For more information, checkout the information page: http://crohnsmap.ticketleap.com/symposium/

BestStory.ca

The folks over at BestStory.ca have published another great article about Crohn's and its relationship to MAP.  See the excerpt from the site below:

Medical pioneer from Down Under leads world in Crohn’s treatment

Analysis by WARREN PERLEY
Writing from Montreal

Dr. Thomas Borody of Australia enjoys the highest remission rate of any doctor in the world when it comes to treating Crohn’s patients. Now he and U.S.-based Dr. William Chamberlin, who like Dr. Borody treats Crohn’s as an infectious disease, talk about the antibiotic formulas they use, their success rates, and their views on the future direction of Crohn’s treatments. Microbiologist Dr. Saleh Naser of the University of Central Florida explains why the connection between MAP bacterium and Crohn’s continues to confound most microbiologists and gastroenterologists. 

 

Anti-MAP.org is coming up on it's 4 month anniversary in operation and the community is now nearly 100 registered users!  Thanks to everyone that has helped spread the word about the site.  Please continue to do so.  The larger the community, the more active the forums and the more quickly we can help further the cause of improving our understanding of MAP and ways to treat it.

It's with great excitement that I can announce that one of our community members is organizing a research symposium this summer in Chicago.  The details will be forth coming, but in the meantime, please check out this forum topic for more information: Upcoming MAP Research Symposium

 

There are a couple of topics worth highlighting this week:

First, Dr. T J Kuenstner (a member of our community and founder of AVIcure Bioscience which develops and markets UVBI related medical devices) recently had an article published in the World Journal of Gastroenterology, titled "Resolution of Crohn's disease and complex regional pain syndrome following treatment of paratuberculosis."  This paper review a number of individual cases where a combination of anti-MAP antibiotics and ultraviolet blood irradiation therapy was used to successful treat Crohn's Disease"  There is a forum topic dedicated to this paper, check it out and add your thoughts.

Next, the RedHill Biopharma phase III study of RHB-104 is getting some additional attention.  It has been linked on this Anti-MAP.org almost since day one, and now the CCFA is advertising the study on their website and through targeted email solicitation.  For more information you can visit ClinicalTrials.gov, the CCFA website or the study screener to determine your eligibility.

Update (29/Apr/2015):  I just added a new research section on Ultraviolet Blood Irradiation (UVBI): Research//Ultraviolet Blood Irradiation.  So far there are just a couple links, with the first being to the article above recently published by Dr. Kuenstner.  Please help me find more relevant articles so that I can help our community understand the role that UVBI may play in the treatment of Crohn's Disease and MAP.

 

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