This is the picture of a big achievement for the Hermansky-Pudlak Syndrome Network. There are so many people who should be posing in this picture with us.We’re standing around a little sign that the American Thoracic Society gave us to put by our booth. It’s “thanking” us for participating in the ATS Partners in Research program. I put that in quotes because we are the ones who are thankful for the opportunity. It seems almost funny that they’d thank us.
Essentially we had to commit to giving ATS $25,000 a year for two years. The money would be matched dollar for dollar by ATS and awarded as a grant to a promising researcher (this time it was Dr. Lisa Young.)
That meant that not only did we have to get on the ATS radar as a worthy cause, but we had to come up with this money – a tall order for our shoe string budget.
Getting the attention of ATS was a careful process. Four years ago Donna and Marie found out that ATS accepted scientific posters from patient organizations and that they allowed patient organizations to get a booth in their trade show.
We didn’t have the money for booth, let alone a grant like this one. Donna and Marie found two chairs and sat in front of our scientific poster for four days – something you just don’t do. The society was so impressed with their tenacity that Donna was invited to participate in PAR – the Public Advisory Roundtable.
The next year we had enough money for a booth. As Donna put it, “We got rug!” We were invited to send a patient speaker, and I joined Donna with Elsie and Benny in Orlando as our patient speaker. I spoke in front of a huge room of doctors on that trip about the basics of HPS.
During the next year the Molter family came to be a part of the HPS Network. Fantastic fundraisers, the Molters made it their goal to go beyond funding the day-to-day operations of the Network (something important for any would-be donors out there). They recognized, as we did, that the way to get the interest of researchers who would make us their lives was to offer them funding for their work.
The Molters hold a “Little Las Vegas” fundraiser at their country club. They have a silent auction and in their first year raised about $50,000. It was enough in the first year to put us in the research “game.”
About that time we learned about the ATS research grant program. We were excited, but at the same time, very keen to look out for our interests. After all, this was our first big shot – we wanted to be sure that those who were in the “know” about HPS research would have input in the awarding of the grant.
In the meantime, Dr. White, the doctor that developed the diagnostic test for HPS and does free HPS testing to this very day, had a crisis. The camera he used on his electronic microscope to photograph the platelets was old. Everyone was going to digital cameras and Dr. White would no longer be able to buy the special film that his camera needed. The new camera – a cool $87,000. Without it, we’d lose the ability to easily (and cheaply) get patients diagnosed. That diagnosis is critical to making referrals for things such as the drug trial.
So, the first year $25,000 of the Molter’s research funds went to ensure Dr. White could stay in business with his research, and the contribution his diagnostic services made to everyone else’s research would continue.
Donna was leery to approach ATS until we had the total amount needed in the bank. But the Molters and the good people of Fort Wayne pulled another miracle out of their hats. They had a second fundraiser as successful as the first. Now we could in good faith approach ATS ready to do business.
So, as you can see, this little sign is a big achievement for the HPS community. Without all of our fundraisers out there, from the folks that raise $50 a year to the Molter’s huge fundraiser – we wouldn’t be able to both keep the Network in business and start a research fund. Without Donna’s political savvy, the willingness of people like Karen, Elsie and Benny to come to ATS and be the faces of HPS, the support of everyone out there that helps us, this sign, and the grant it represents, would never have been possible.
I’m also pleased to tell you we’re very close to being ready to explore our second major grant award. There are now several organizations willing to match our funds dollar for dollar. So, over the next few months as the finances are finalized, we’ll be deciding what is best for us to do strategically.
Comments