Monday, June 23, 2008

Get This....

So, the boys go to Camp Bold Eagle every year. It's a bleeding disorders camp, but you'd never know it. Anyway, the cost is $500 per camper. The camp is in Michigan. They began attending camp there because our original state hemophilia chapter didn't have a camp. The first year the boys went, GLHF (Great Lakes Hemophilia Foundation) provided the funding.

When we moved to Illinois, the boys still wanted to attend camp in Michigan. Who could blame them? I had heard different stories about our own state's bleeding disorders camp and wasn't sure it was a good fit for the boys. So, we approached the Coalition for Hemophilia B to see if that group would sponsor the boys for camp. And they did. And it was great.

Which was a good thing because, come to find out, there were some serious problems with the camp in our own home state that year. Big problems.

So the next year, we did the same. The Coalition for Hemophilia B again sponsored the boys.

Now it's year three. I was thinking that we'd gotten some great help from The Coalition before but it would be nice if our local chapter kicked in some money. After all, they raise money for kids to go to camp all the time. And our treatment center, from whom we buy our factor, donate money to that fund. So, I thought I'd give it a try.

I was told that, sure, the local foundation would be able to help with $400. We would have to work through their patient assistance fund. O.k. Cool.

So, last week, I email off the info for both the Coalition and our local chapter so that the boys' camp fees are paid. I get an email and a phone call from our chapter telling us that we'll have some paper work to fill out (o.k.) and that we'll have to give them a copy of our mortgage statement or rent so that they can WRITE A CHECK TO OUR LENDER for $400. The idea is THEY pay part of our mortgage so that we can "afford" to pay the rest of camp. Um.

Whaaa? I think not. How messed up is that?

So, I write an email saying that while, yes, I was told we'd have to go through the financial assistance program, no one told me I'd have to give financial records just to sent my kids to camp. So, never mind. But now I know how things work, so thanks.

THEN I get some chastising email about labeling the organization, blah, blah, blah.

O.K. WTF. That did not go over very well.

Lemme see if I got this correct.

You, mr. local chapter person, have a job because you run a non-profit organization that exists for the sole purpose of helping people like me. Additionally, you accept donations from big pharma so that you can send kids to camp and do other great things for us poor lowly hemos.

All I wanted was some help...$400 worth...but because I don't think I should have to give you my mortgage information, I'm being a bad girl? Look buddy, don't fuck with me. And if I wanna tell people that the Hemophilia Foundation of Illinois wants to make us jump through monkey hoops for a lousy $400 when we spend $200K per year on factor and I KNOW that some of that money goes into your piggy bank?

Well, I will.


Anonymous said...

Good going! Sometimes people need an eye-opener. I hope the guy reads this AND he looks to other state chapters to see how they are doing it. Send it to your mortgage co??? The same mortgage co's that are ripping people off daily to line their CEO's coffers? Crazy!

mama o' the matrices said...

um, no. Not okay, not even necessary. WTF?