Friday, July 18, 2008

Cures don’t come for free

If you’ve ever toyed with the idea of doing your own Hermansky-Pudlak Syndrome fundraiser, now would be a good time. We’ve had a very busy spring and summer at the HPS Network. We’ve attended multiple medical meetings, spoken to thousands of researchers and physicians, marched in the New York Puerto Rican Day Parade, helped dozens of people connect with the NIH for research-oriented treatment, hosted the New York conference, hosted a major outreach effort in Florida and attended NOAH as an outreach.

We accomplished a LOT! We have a lot to accomplish as we finish the summer and move into the fall. Among the items on the list – the annual Puerto Rico outreach and a number of additional medical meetings just to name a few things.

But, nothing is for free in this life. Sending packets of information to new families and doctors takes money. Printing brochures takes money. Maintaining the 1 (800) number at the office takes money. Running the computers and our server takes money. Making copies takes money. Translation fees cost money. Going to medical meetings means paying registration fees, booth fees, shipping fees, hotels and airline tickets. Organizing the conference in a way to try to keep the costs down as much as possible for families isn’t cheap either. This past New York conference I think ran around $50,000 (and that was with a lot of items we needed given to us for free or at cost.) We’re currently feeding a colony of HPS mice being studied to help us find new treatments and we’ve been funding our own research for the first time.

We can’t keep doing those things without good old fashioned cash. And just like the rest of the country, our expenses are going up. And that’s just to keep doing what we’re doing now. It doesn’t address the possible need to hire future staff, or to fund additional research outside of the NIH. It doesn’t address serving the needs of more and more families every year. We’re growing all the time, and as we grow, we have more and more needs.

Treatments and cures don’t happen on their own. They especially don’t happen without patient involvement for ultra rare disorders like Hermansky-Pudlak Syndrome.

I hate fundraising. Boy do I hate it. I frankly hate asking my friends and family for money. I’m not much of a sales person to be honest. But I look at it this way. I buy girl scout cookies. I buy cookie dough for the local high school band trips. I’ve bought candles and wrapping paper from church youth groups. Thus, asking friends and family to buy an HPS Christmas CD, or whatever else we happen to be selling, is no big deal. What comes around goes around – and I’m not asking so I can go on a trip or go to camp. I’m asking the people that love me to help find a cure.

There are a number of you out there that do more than your fair share of fundraising. We’re so grateful to you. Some of you are able to bring in thousands of dollars, and we treat each one of those dollars so carefully! They are so precious.

But to help you don’t have to raise thousands of dollars. If everyone affected by HPS pitched in just a little we could make a big dent in paying for the things we need.

The patient registry is growing all the time. I don’t know what it was at last count – but lets say for the sake of argument (I know it is more than this now) it’s 800 HPS’ers.

If every person with HPS raised $50 a year that would total $40,000 a year. Now, let’s say that everyone has relatives that want to help. Let’s say those 800 HPS’ers got two other people to raise $50. That would be another $80,000. (Sandy, check my math – remember, I’m numerically challenged – and I haven’t been kidding about that!)

In the course of a year, what do you spend $50 on?

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