As I flew home from the American Thoracic Society, the entire plane could have been supported by the air I was floating on – squeeze me, squish me, make me sit in the middle seat – I didn’t care. I was euphoric.
Coming home from Hermansky-Pudlak Syndrome events can sometimes be a downer. Suddenly you’re back in the real world where no one seems to understand the alternate universe that inhabits my brain – HPSland. I wanted to shout to the entire plane full of families, doctors, business people and senior citizens, jump up and down, and tell them what an event had just taken place.
I’ll no doubt eagerly share some of the photos from the ATS show with friends and family, and they’ll politely look at them and probably never appreciate what they’re seeing.
A while back one of the leaders in the ATS shared with Donna, our president, that early in his career he’d tried to publish a paper about HPS, but the disease was so rare, so obscure at that time, that the publication couldn’t find anyone with the right experience to review the paper for publication.
In 1992, Donna founded the HPS Network with a handful of families. At the time there were only approximately 25 known cases outside of Puerto Rico in the United States.
Fast forward to this last week.
The HPS Network is now a research partner with the American Thoracic Society. Our logo appeared on the trade show’s pillars with the logos of the big boy organizations like the American Lung Association or the Cystic Fibrosis Foundation. When we walked into the convention center and saw our logo there (even if it was on the bottom), we squealed.
Not only that, but our very first research grant recipient, Dr. Lisa Young, was also on the pillar for winning the Carl Booberg award. Booberg is the retiring CEO of the ATS. In his honor, an award has been set up to recognize promising junior researchers whose work is not only top notch, but has the potential to have a great impact on lung disease. And there she was “our doctor.”
Not only were we recognized for these things on show signage and in show literature, but Donna Appell, our President, is the incoming President of the ATS Public Advisory Roundtable (PAR). I’m pretty sure Donna didn’t have this in mind when she founded the HPS Network on her laundry folding table in her basement back in 1992.
But this isn’t about achievement or ego. Frankly, Donna, and the rest of us, would happily be doing other things with our time. No – this is about the cure.
Because of this high profile exposure (I believe) the tone of the visitors to our booth seemed to make a shift this year. It used to be doctors cruised past our booth barely taking note. HPS, who cares – none of my patients have that. It’s rare – no value there. No way to build a career or fund one’s lab, so it often seemed as though we had to drag doctors into the booth. We had to politely challenge the notion that none of their patients have HPS – if you don’t know what it is, how do you know? If you think all people with albinism are blonde, could you be missing a patient with ocular albinism that has HPS? Why would a pulmonologist really care about a vision disorder anyway?
It often felt like the doctors that did give us 30 seconds were doing it out of pity or guilt.
But this year there were doctors we’d never met actually looking for our booth!
One came by and said, “I saw your logo on the pillar and I didn’t know what HPS was, so I thought I’d come find out.” A group of five residents came by and said their mentor had been talking about HPS at breakfast, so they felt like they needed to get up to speed. Someone we don’t even know was TALKING about HPS!
The majority of the doctors seemed to linger a little longer. They didn’t just take a brochure to pacify us and disappear. They actually stopped, read, and asked questions.
And we actually had some hope to offer. We talked about the Phase III Pirfenidone trial. We talked about looking at their pulmonary fibrosis patients to see if they had a nystagmus. What a shame it would be for those patients to loose a chance at this. We talked about the just-opened multi-drug trial for end-stage pulmonary fibrosis related to HPS.
We assured them that bleeding complications could be treated and talked about our two lung transplants. We had hopeful, exciting things to share.
It was an awesome week.
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