Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group CHANGE is coming to KickAS

Hello gang:

During the past couple of years I have struggled with the problem of how to keep this site going in the event of obvious and not so obvious eventualities.

Our annual expenses are not very much, and Timo left us many years of operational funds as I intend to do from my own estate. But there must be someone to physically manage the site, despite our rather low traffic levels lately.

Certainly, the legacy data here is a repository of useful knowledge, but it is difficult to access for most people and I want the changes to incorporate some easier way to search the treasure-trove of experience we have on record.

As I have done previously, we will get a 501(c)(3) designation for the main site (that is a charitable organization so that donors in the US can deduct their contributions from their taxes), and link to a dot-com for commercial interests that align with our experiences to the extent that we can promote their products or services. We would be careful about outright endorsements, but can do product reviews, for example.

Well, bottom line I am asking for help from our members to contribute ideas about what we want to see in the new design. We will link social media groups like Twitter and Facebook of course, but if there are old forums we should combine or eliminate or new ones to consider; we should investigate the possibilities and desires of our members.

To our donors, I wanted to let You know how much I appreciate Your participation and wonder whether we should start a separate post for those who don't necessarily want to remain anonymous but I don't want to pressure our members and contributors, either. We will try adding the panoply of payment options, including cryptos.

Thank You,
HEALTH

John

Love the website!

Keep up the good work!

Forums of this sort are very important to sufferers especially as A.S. is something of a minority interest. I do come across fellow sufferers from time to time mostly at hospital outpatient department. I live in a small town with a population of 4,000 and as far as I know I am only one of two A.S. sufferers in town. As someone who has suffered from A.S. for over 60 years I try to offer advise on here and I myself have learnt a lot from this and other A.S. forums I post on. Obviously we aren't all going to agree about everything all the time but keep up the good work you are doing a great job.

Hi John, I've had tremendous help from this life-changing website and I am so indebted to you for enabling me to find relief from the living hell that was my life in 2016. I had lost my will to live and this was an answer to a very desperate prayer. However I have to agree that I found it quite difficult to access the information I needed. I don't have the first idea how to go about sorting that but am thrilled it's being considered.

Something I've been wondering about and would like to suggest is a revamp of the recipes aspect. Maybe it could even become a separate, but linked website. It would be great if a recipe could be posted with photos, a place for comments and reviews, and links to help one find it. So, for example, a chicken salad could be found through a search under chicken or under salad. All the salads could be in one section.

I don't know if this would be very difficult or expensive to do as my knowledge of such things is limited. It might also not be a very practical idea.... But as the NSD is so difficult to follow, especially in the early days, eating can become such a problem. I feel a brilliant recipe section would be useful.

Thank you for your always kind and generous help,

Jane

John,

Forum platform definitely needs tags and something more modern. I like that we aren't on a socially connected platform. I like being anonymous.

Thank you for all you do!!!!!

Hi,

First thank you so much for keeping this forum going all these many years. I felt completely crazed with my weird symptoms and found much comfort here.

Even though I use the internet all the time, I have zero experience with forum maintenance or management. I'll pm you my skype info and we can chat about whether or not I can help in some way.

Edit* you'll need to message me as your account is not accepting PMs. Happy to chat.

Peace, Erica.