A Million Dollars Towards IC?? How would you spend it?

[icnmgrjill]

Here's a fun question. If you had a million dollars to dedicate to IC, how would you spend the money? Would it be for research, patient scholarships to college, help for struggling families?? And, if research, what type of research would you fund??

Think about it.. it's a harder question than it first appears. I would create a small research foundation with a medical board comprised more of the IC rebel researchers rather than the status quo. But the board has to be more than urologists.. it needs diverse viewpoints and specialties like neurology, gastroenterology, obgyn, etc. etc.

I want to study questions that have not been pursued as much in the past... like how the nerve pathways that, I think, connect IC to its related conditions.

I'd love to have a scholarship fund for IC patients to help them get through college... but they'd have to be dedicated and work their asses off to keep them. No lazybones entitlement kids here.

Having an emergency loan fund for patients who find themselves short on cash, struggling to pay for electricity in the winter and medication in the summer.

And I'd love for some of this money to be used to reemploy as many pateints as possible to help them get and keep their health insurance.

There are so many things we could do with it.

What are your ideas??

Jill :)

[mmorgan]

Jill,

I couldn't agree with you more regarding the Research Foundation and what type of board members it should be comprised of..not the status quo....where are we going at this rate?!!
Where and how can we raise a million dollars?!! What foundations could we tap into - or maybe we need to approach the Fishbeins and tell them they need to put a stipulation on what they will fund! Oh, but I forgot! Didn't they lose their money in the Madoff scam?! Ok, there are other foundations!!

Maureen

[76sunflowers]

Hi! This is my first response on the forum and I thought this to be a great question to ponder...

I very much agree with research. I'm not one who ever really responds to the "typical" treatments for much of anything, and I also tend to have severe allergic reactions to things before I even have a chance to see if it would help. My urologist is fabulous and always on top of the latest thing to try and is open to paths less traveled - I would probably want him to be at the head of the board, followed by the various other specialists mentioned. Some alternative specialists would be great to have involved as well.

An easily accessible clinic just for IC patients would be awesome...

[statesboro]

That does seem to be an interesting question. Ok. I would also try to start a research foundation with doctors, nurses, and scientists from different backgrounds and specialties.(even some that speak languages that I don't understand) Yep! IC is not just among Americans. Of course, I am not the first one to put research foundation. Also, I would try to do some advertising. Ok. I have heard of some IC patients not wanting to talk about it and/or hoping some people wouldn't be aware. Regardless, I don't mind mentioning it. (which I can do without spending any money) Ok. What I am thinking is that I would try to make sure it gets mentioned on television.(somehow) (even if I have to be the one talking) Also, I have looked in medical books that will mention kidney stones, urinary tract infections, and incontinence, but I won't notice IC at all. I do know some medical books do mention IC as well. I do know some IC/chronic illness patients have written books by now.

[ICNDonna]

I would invest a great deal of it --- a million dollars invested wisely could end up with a great deal of money on a long term basis --- to be used for research.

Donna

[rubydoo]

As long as the research foundation folks are not in cahoots with the pharmaceutical drug companies, like on their board of directors or something like this.
This is common with a lot of the other illnesses I have to deal with.

Regarding spending that kind of money....how about print ads and commercials on tv..not for drugs but on raising awareness. The more awareness the more chance of a cure?? Hopefully?? Fingers crossed???OR...letter writing campaigns to Oprah B4 she quits her show so she could do a show on this...well, that could be free for all us members to do...write letters...etc.

For me personally, I'd like to have doctors figure out how the central nervous system is involved.

My memory is bad so bear with me...I can't recall if I wrote this to you or not...Seems as tho the small-fiber neuropathy I deal with for over 8 yrs (severe burning in nerves in legs), has worsened since the IC is OUT of remission. Lovely..NOT!

BTW, I cannot image not talking about one's health. I have had autoimmune diseases for 27 yrs so far and a host of other illnesses on top of those! The only way to learn new things and how to deal with things is not be in the dark. If someone is quiet about it maybe they're ashamed..and no one asked for any of this..no need to feel that way. I'll get off my soapbox now. (tee hee)

Janice, aka Rubydoo

[Shelleynz]

I would want to spend the money on Research of the nervous system as I have a sub-type of IC caused by an infection that went untreated for years and resulted in chronic neuropathic pelvic pain for which nothing seems to help much especially long term.

[76sunflowers]

Raise Awareness

[runningshoe]

Ladies ladies ladies (and gents)
I am all for the research. There is no doubt about that! But couldn't we first have a little fun? How about a huge party where we could all meet and eat and drink IC friendly foods and laugh and forget....

I love the idea of an IC clinic too. Can you imagine a place where all the latest info and treatment was under one roof? Can we add a spa there too?:)

[LithEruiel]

I would put most of it towards research for a cause/cure...I mean if we had that it'd help everyone stay in school, keep their jobs, etc.

I also think awareness is a great idea...if more people knew about it, it would be a lot easier to raise money (like breast cancer, all the pink stuff...everyone knows about it.)

I also think it would be great to have an IC clinic with a IC friendly cafe and alternative treatments like yoga and pilates classes as well as conventional medicine and physical therapy. I wouldn't know where to put it though since we're from all over the world!

Can I get one of your scholarships, Jill? heehee

[icnmgrjill]

You know... we were actually thinking about doing a week long retreat/seminar for IC every summer where there would be classes, good food, doctors to give lectures, etc. etc. What do you think of that idea??

Jill O.

[LithEruiel]

I think that's a great idea...I'd definitely come if I could!

[Goodnightmoon]

Great idea about the seminar! Love it!!

And love the original quesiton!! Cool idea....

To add to the original question: clearly RESEARCH, with two main directions:

- one would be an easy, in-office DIAGNOSIS of IC, because I just cannot believe how many people have to suffer for so long before they are being diagnosed. The urine test which is currently on the way (AP-factor, this is?) for me is one of the most promissing routes ever!! I just cannot imagine what such a test would do good for us. Finally we would come to know how many of us there really are. Maybe we could even classify the different types of IC (because clearly this is not ONE disease)... maybe like diabetis I and II ... and have different approaches for different types. And once we know how many we are, maybe the pharmacy industry gets more interested in us "as a market". I just sooo hope they find a easy diagnosing tool, so half a million for this!

- second is education of doctors and appreciation of IC docs!!!.... awareness or what ever you call it. About the disease itself, about all the links to other diseases like PFD, etc etc. Make it "sexy" for docs to specialize in IC instead of turning us down because there is no surgery they can perform on us.... I would gladly give the other half million for IC-specialist awards in different fields and a big thank-you to the few IC specialst who are out there!!!

This is how I would spend the money:)

[LithEruiel]

To me the PUF questionnaire is an easy in office diagnosis of IC (that's how I was diagnosed), but the APF test sounds like it would be more accurate. Different types of IC is really an interesting thing to think about.