Grassroots Conference

by on Sunday, May 17, 2009 2:38
This entry is filed under: Coping/Support

Saguaro National Park in Tucson Arizona. A truly magical place! Image by Leto A.

Hello everyone! I am a firm believer in grassroots movements. As such, I am feeling a strong desire to put together a conference for J-pouchers. I live in Tucson, AZ and believe we have some great resources for J-Pouchers with the University of Arizona here. Anyway, what I am asking for is some honest feedback and input from as many people as possible about holding such a conference. I have a personal website: where I have a page dedicated to obtaining information from J-Pouchers and Ostomates on the possibility of such a conference. If you would please take a moment to look at the page and give me your feedback and comments, it would be greatly appreciated.
Abby Cashman

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4 Responses to “Grassroots Conference”

  1. avatar

    Megan says:

    May 17th, 2009 at 10:26 am

    Hey Abby, I think it is great that you are “musing” over a conference for jpouchers/ostomates. Since I’m in academia I frequent 2 design conferences per year which is plenty for me to attend in all honesty. But all my family lives in Tucson so we do come home often and if the conference happened around a time we scheduled a vacation home, we would definately attend. My thoughts are that there are ostomate conferences and meetings, etc..I know ostomates have a good community. And the CCFA does conferences that people attend. But I don’t know of any jpoucher conferences so that gives your idea an advantage. What is the statistic for jpouchers in the U.S.?

    Would the conference be for scholars, doctors and patients? Would you want it to have professional presentations or just networking among patients, etc….My concern with professionals would be MD/Ph.D’s have to go to conferences for their work, and I’m not sure how many would want to come to an unknown conference without national or international recgonition. I have a feeling I am thinking about this way too much!

    But if it is more focused on the patient and patient networking then you should visit and ask the veterans there if there has been success with people setting up jpouch gatherings.

    My other concern would be that jpoucher’s use online support groups during certain periods of time during their decision making, surgery, then recovery, and then those that have complications and those that don’t. For those that heal they often move on with their lives and don’t too much think “I am a jpoucher”. In other words, you have a tricky demographic to capture.


  2. avatar

    jm says:

    May 18th, 2009 at 1:25 am

    I’m not from Tucson or even your side of the pond but the pouch group I am involved with organized a one day conference in the UK last November. Our biggest fear was that we would organize something and nobody would turn up. We catered for 40 people, we wanted to keep things fairly intimate and also see how things went so we could perhaps plan a larger event in the future.

    We need not have worried about attendance, the event sold out in a few days and we could easily have had 2 to 3 times the number attending. We had no problem attracting the medical professionals to come along, but we are a recognized UK patient support group/charity so that was obviously a great help. We had great interest from the health care professionals who simply wanted to learn more about people with pouches and how they could help them. We had a wide range pouchies attending, some just going through the decision making process to those half way through their surgeries to long termers and everybody who was there got something out of it.

    Our day was split into two halves, the morning looked at the medical aspects and the afternoon the pouch life experience. We ensured there was plenty of time for networking and this was one of the keys to the success of the day, we also book-ended the day with social gatherings in the evenings before and after the event. As the event closed pretty much everybody wanted to know when the next one will be.

    We’re now looking to make this at least an annual event, and if our experience is anything to go by there is a great demand for this sort of thing. Communicating via this sort of medium (by which I mean the web) is something I’ve long been a fan of but it will never be a substitute for real-life interaction – we organize social get togethers on a regular basis up and down the UK and these are always well attended and enjoyed by everybody who takes part.

    I’d say “If you build it, they will come”.

    Good Luck,



  3. avatar

    Gabby Berg says:

    May 18th, 2009 at 8:31 am

    Hi Abby. My husband (and therefore me, too) is being assigned to the AFB in Tucson, and I’m wondering what resources are available in Tucson for JPouchers. I had done some initial research and wasn’t able to find ANYTHING! Can you fill me in? I would really, really appreciate help from someone who knows, and when I am in Tucson, I’d LOVE to go to a JPouch meet up!


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