Hermansky-Pudlak Syndrome needs some blockbuster press coverage – and we need it now! To be honest, we’ve got to pick up the pace on the recruitment for the protocol. The thing about HPS is most people that have it have no idea. I know people pass away and never know about it. Most doctors either don’t know about it, or it’s some vague memory from medical school and they often don’t remember all the facts right.
The way many of our families get diagnosed is through their own research. Their child exhibits too many bruises etc. and they get online and do some of their own research. Or, they read about HPS in an albinism-related publication or hear about it on an albinism-related listserv, and recognize the symptoms in their own life.
The trouble is not everyone with albinism belongs to such listservs, or gets information from NOAH.
I realize promoting our protocol wouldn’t make an interesting show for Oprah, but so much of the HPS story really would. The tribulations of trying to get people diagnosed, advocating for research or the struggles people with rare or orphan diseases experience – all of these would make great shows.
So, I’m now writing to Oprah every day. I’ve organized Oprah letter writing campaigns in the past with no luck – but we don’t have anything to lose. We need someone with an audience of millions to give us a little air time.
The way many of our families get diagnosed is through their own research. Their child exhibits too many bruises etc. and they get online and do some of their own research. Or, they read about HPS in an albinism-related publication or hear about it on an albinism-related listserv, and recognize the symptoms in their own life.
The trouble is not everyone with albinism belongs to such listservs, or gets information from NOAH.
I realize promoting our protocol wouldn’t make an interesting show for Oprah, but so much of the HPS story really would. The tribulations of trying to get people diagnosed, advocating for research or the struggles people with rare or orphan diseases experience – all of these would make great shows.
So, I’m now writing to Oprah every day. I’ve organized Oprah letter writing campaigns in the past with no luck – but we don’t have anything to lose. We need someone with an audience of millions to give us a little air time.
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