Heres A Way We Can Help One Another!!!

[Allyoopa]

Hi Everyone,

Adele, here...aka Allyoopa. I have just read a thread from Kara 29 and it has broken my heart. Her problem being, needing treatment that is not affordable and the added horrible feeling of having to borrow money to fulfill this need. I realize how lucky we are in Canada to have such wonderful medicare but that doesn't help those of you who are not covered for certain procedures where you live. I don't know if this has ever been suggested or not but, if not please let me be the first to do so.

We have over 11,000 IC Proactive Members and if each of us sent just $1.00 each month to an account in Jill's trust, so there would always be money set asside for those IC Sister's/Brother's that may not be able to afford their much needed treatment. The withdrawl could be made anonomously, again through Jill so there would be no need of embarassment or Thanks. It would give me great pride to know that I could help one of my fellow IC Sisters/Brothers in a big way for less than the price of a cup of coffee each month. Botox, itself is not covered in Canada either but the procedure is not deemed elective, therefore we pay only for the botox which brings the price down considerably. I would like to know how feesable this is? I myself will do anything to help organize this or just donate my 'procedure gift' each month. What do you think??


IC A CURE


Many Thanks
Adele
:) :kissing: :)

[ICNDonna]

I know it sounds like a wonderful idea, but it would be a tremendous task and responsibility to supervise such a fund. I'm not even certain it can legally be done.

:(
Donna

[Allyoopa]

Hi Donna,

Why couldn't this be done within the IC Foundation? This in itself is turning into its own desease. I'm just tryining to come up with a way to alleviate the added stress and be proactive. I'm just tired of IC and all the added problems that come with it. If there is anything I can do to help make this happen, I will gladly do my best.

Many Thanks
Adele

[Dixiefireball]

oh how i agree that this is a wonderful thought, but I must agree with Donna that this would be a huge resonability for Jill and her staff to handle. Jill has so much on her plate as it is just to keep the ICN site up and her ICN store going. then you must look at this too. Some people may say they where needy and not be. If someone without IC got a whim of this information (if it could come to light.) then they could say they had IC when in deed they didn't and use the money for something else. it may not be legal as Donna said too. There is a huge risk when someone takes on this type of reasonability. Even tho. the idea is great and would be helpful to people like Kara and others who could really use the help.
Some hosp. will help with covering cost if its done inside the hosp. I've did research for this site for two or better years for low income families and not one time have I ever found a company that was willing to help pay Dr bills or test done inside a Dr's office if it wasn't a inc. company that someone had before the date of the visit. its very very sad! :( I know that inc. are so unfair, and those of us who are lucky enough to have them do us no good at times when really needed. Even some Dr offices will not fight with those companies because they know its a losing call or will cost there staff to much time and money in dealing with them.
its a lose lose fight at times.
I so wish there was a way to get around these hard time's when we honestly need something done.
all I know to do is pray for better days ahead to help those in need.
God bless you for your caring idea.
sending hugs and prayers
Rhonda

[Allyoopa]

Hi Rhonda,

I'm not really qualified to answer but I assume if it is done through a foundation then it is legal. I'm sure an accountant and treasurer would need to be elected and probably a new division added to what Jill is doing. It would be alot to work out at the beginning but oh so worth it. And I'm sure there are many of us that would be willing to help in any way we can. Its just a way to be Proactive, its no different than helping those in need from the devistations of Katrina, everyone has a right to donate their money to any organization to which they choose. Mine is IC patients who need treatment! It wouldn't be that we all send an individual dollar every month, we just write a cheque for $12.00 for the year! Rosesitty,Tunia and Ihurttoo are on board with the idea. This idea came to me through getting emotional over Kara29's delema, so my thoughts of people taking advantage of the foundation I will admit didn't come to mind but there has to be some system to doing this. Maybe it means doing it through the actual IC foundation I don't know, I just feel that 11,000 members could do so much in the way of being Proactive even if it s just for one another. People like Kara and so many others cannot go unhelped because of red tape. I'm a strong believer in charity beginning at home and to me this has now become my 2nd home!!! Just for the record I hate the word charity and a hand out, I much prefer a hand up!!! Why don't we take it to a poll!
Thanks
Adele
:kissing:
Thanks Adele

[icnmgrjill]

This is something that I actually talked with my local community foundation about administering for us... but, unfortunately, the money would have to be used only by Sonoma County residents.... and that, clearly, won't work.

Here's the scoop!!! It would cost perhaps a couple thousand to set up legally. I'd need a good, collaborative board of directors composed of patients who would not only make the decisions about how the money would be spent, but would also do the work. I would be happy to be on that board and even serve as President... but I do not have time to run it too!

So.... ultimately... what we'd need are some volunteers who are willing to put together the documentation for the IRS .... and, perhaps even before that, discuss exactly how this group would function, how it would solicit funds, how it would distribute funds, etc. etc.

It's all about manpower folks. The idea is awesome and we've had it before... but we need people who will actually commit and followthrough on the work!

Jill :)

[sandramac]

Adele and Donna i think its a amazing idea ,and i would be more than willing to offer my help.In any way i can.Could we not make this a worldwide for ic patients out there? Power in numbers i say!Let me know.Hugs Sandra :grouphug:

[Cheries]

I would think this would be a great idea, or even to find money for RESEARCH!! That is where the cure lies I believe.

[Tracey5399]

I think this is a terrific idea. Being i have no insurance and have had to fight the system in every way imaginable just to get a little help, i would be totaly appreciative to help in any way. I have plenty of free time on my hands LOL.

Thanks,
Tracey :)

[Dixiefireball]

:Quote: This is something that I actually talked with my local community foundation about administering for us... but, unfortunately, the money would have to be used only by Sonoma County residents.... and that, clearly, won't work. :Quote:

its sad if it could come up and running that it would take so much money to do this, plus it couldn't be used for All the patient in need. :cussing: because of where we all live.

Seems like the goverment always puts a stop to helping people some how. :headbang:

It honestly ticks me off. I've worked with so many needy families over the years. (on and off the boards.) I've seen and heard there cries. It so unfair, Very heartbreaking. (I've also been one of those people in the pass.) its very sad when you have people willing to help, but can't because of all the legal red tape. Uncle Sam always seem to win! :rolleyes:

[hollipop]

I'm on the board of directors for a similar type foundation and we do this all the time. The web site currently has a donation button to send money, and we sell t-shirts and other items that a percentage goes toward this fund, then the board of directors decides who and how much we can give to those who apply for assistance.

[rosesitty]

As I have a background in non-profit organizations and foundations, I think the issue here is that the IC-Network is in essence a for profit endeavor, if I'm not mistaken. Jill is right, a completely separate foundation would have to be set up, with 501C3 status and all the checks and balances that the government would require, as well as the cost of setting up the non-profit organization. I'm not even certain it could be tied to a for-profit website. It would then also take a Board of Directors and some way of implementing a fair system to issue grants and funding. How do you determine who is in need and who isn't? I'm not raining on the parade, I think it's a great idea for those who can't afford medication and treatment. There's just lots to think about and lots to do to get something like this set up.
Stephanie

[BellaTutu]

good idea..in theory - but here's a HUGE question HOW would you determine WHO qualifies for assistance and who doesnt? There are so many of us out here that are either not working due to our IC, are on disability (not alot of money), SSI or whathave you. There would have to be some sort of guideline for income restrictions - just like the Federal and State governments do and we all know what they consider "poverty" level is so very very low - which is why most dont qualify for assistance, its incredibly frustrating for those that are in that situation.

So...there must be a guideline in place, some type of proof of income requirement, a set assistance requirement, how much a person could get, how MANY times you could use this assistance in a month, year, etc, a list of what drugs would qualify for assistance (lets face it..not everyone is doing "conventional" drug therapy or treatments, so it does get expensive depending upon who is getting what done - and I feel for Kara and all others doing "unconventional treatments" but there is a reason insurance refuses to pay for Botox or other things in that area - been there with unconventional treatments myself and it does get expensive but thats not a reason to provide assistance to someone because it is an ELECTIVE procedure (again, another reason why insurance wont cover - so you cant throw elective procedures into this idea. Drug assistance possibly, but surgeries or the like would be out of the question), insurance - do you have it or not, Medicare, Medicaid, state programs, etc. Narcotics probably could not be covered as so many rules go along with them - then you get into the entire thing of you must provide a prescription (current, not refills) chit to do so legally for ANY medication.....talk about a headache and a huge responsibility. There would have to be some sort of legal documentation drawn up and some sort of malpractice insurance that must be done, not to mention its considered "income" and must be claimed as such - the ICN must declare it for taxes and must state who received what to the IRS - so that can count against you if you are on disability or any other type of assistance. Sad to say, but true.

There is alot of things to think about with this idea...again, its good in THEORY..however to see it come to fruition is a totally different ball game - and to make it work will be quite difficult as there are thousands that have IC and cannot afford their meds or treatments, or insurance pays some but they are left with copays and whatnot that can run into the thousands. My meds alone in one month with MY copays are $400.00 and I have a good insurance plan, its just most of my meds are a $50.00 a month copay - I use our mail order to save money but its still expensive and I only save $50.00 by doing so.

Just my opinion....

[topcop229]

I am definitely on board with the idea, and I would be happy to volunteer and help any way that I can. My educational background is in finance and accounting, and I also have a great deal of experience in fraud investigations, so that might help, too! One way that I can think of to help ensure that the funds are used appropriately is that the person in need would have to send an "application" including maybe even a note from their doctor confirming their situation. And, couldn't the checks even be sent directly to the doctor/ hospital/ pharmacy for the treatment? I think it's definitely worth exploring. I am lucky enough right now to have pretty good insurance, but I know there are so many that don't. We all know what it's like to be going through this, how stressful it is...I cannot imagine having to add on to that figuring out how to pay for every treatment, doctor's appointment, etc.

Let's really try to figure this out, it would be so worth it!!! Again, I am here to help and will take on whatever roll I can, just let me know!

claudia

[sacausa]

I think this is a great idea and an attorney/accountant etc... will probably lend their services for free to help draw the papers up. I think that people misusing the system wouldn't be a problem if one payed the doctor directly etc... and not give the money to the individual. Furthermore, the tax papers seem more difficult than they are since this it is not everyones specialty! I hope that this idea isn't immediatly thrown to the side and that someone will keep on keeping this awesome thought on the radar. Helping people in need should be everyone's responsiblity, people so easily write a check for the people in Africa but why are we so reluctant to do the same for people in our own neighborhood.

[Kara29]

:angel: Adele,

Thank you for thinking of me in my time of need. Your heart is so big and warm. What a generous spirit you have. Your kindness makes me speechless. And I usually have a lot to say.

What a great thing you are trying to do for those in need of a hand!!!

My heart goes out to you and I hope you get well so soon!

Love and Hugs, :kissing: :grouphug: :angel:

Kara