Idea for a IBD non-profit... needing some ideas and guidance.

[amandaerin]

Everyone here can probably agree that CCFA sucks. It's basically a money making scheme to get drug companies more money with little to no resources being allocated for the well being of the patients.

I'm wanting to start a patient advocacy group (CCAI: Crohn's and Colitis Advocacy Initiative). The mission being to spread awareness of what the diseases actually do to the patients in a realistic fashion that encompasses the physical, mental and painful sides of the diseases... not just the poop joke that the CCFA seems to view it as. Seriously, their new campaign is people sitting in bathroom stalls with the phrase, "There's no stalling, we need a cure now." Uh huh.

The main target would be the medical community. Medical professionals need to be aware of how the disease effects patients in reality and not just in a text book. This could be accomplished through an awareness campaign involving materials with the life stories of patients and summaries of what patients say the disease feel like... with an encouragement to check out IBD forums so they can see what patients are really saying (I mean, how many of us say the things we say on forums to the doctors? Most of us are afraid that if we tell them how much pain we are in they are just going to treat us like drug seekers.). If they saw this, maybe they would start viewing us a bit different.

If anyone likes my idea and wants to offer some suggestions as to how I can get this started or even be involved in starting it (I live in the Cincinnati area), please contact me

 

[Cross-stitch gal]

This sounds like a good plan. Might be fairly helpful and could be pretty interesting if it can take off. Do have a few questions for you though. Although, I'm sure that you may have already thought of some of this.

-How would you be getting the money to support this group? Would it mainly be run by volunteers?
-Would you be planning to get a hold of local legislatives to help in advertisement, raising money, etc?
-How would you be including the medical community? Do you already have ideas as to a few doctors, or people to include?

These are the only things I can think of at the moment. Will let you know if I can think of anything else for you. Good luck

 

[SarahBear]

It sounds like a great idea. I'm interested in hearing your responses to Cross-stitch gal's questions. I think once you have gotten a good solid plan laid out, finding volunteers will be pretty simple.

I hope it works out!

 

[rkoll327]

Love the idea! I think a huge part of your non-profit should also be working with local government and representatives to get some more rights for those living with Crohn's. For example, working on restroom access or disability status. And I would also love to see what you think about Cross-Stitch Gal's questions.