Wednesday, February 25, 2015

It takes an HPS Village

A few weeks ago Donna and I were communicating with a researcher interested in doing more work with Hermansky-Pudlak Syndrome. During the course of the conversation, he said something that just made my day. I felt like asking him if I could quote him, but I was too polite. Grin! I didn’t want to side track the conversation we were having about research.

But, what he said was so important, I want to share it with HPSers, as well as all of our supporters. He said that one of the reasons he was so eager to work with HPS was that, for a rare disease, the HPS patient community is so well organized. He knows that when he is ready, he will be able to reach the patients he needs to reach quickly.

Wow! Take that in a minute!

I want to share it because he is right. We can reach a lot of our members very quickly because we are so connected as a community. We can do that because of all of you. All of those who have registered with the HPS Network, who check in with the HPS Website, follow us on Twitter, Facebook and Instagram, come to the conferences, go to NIH etc…..all of that has been noticed by a researcher who is pretty new. He hasn’t been a part of our world for many years. It was a huge compliment, but it was a compliment to all of us.

Sometimes I think people feel the things they do are small. They don’t truly appreciate how valuable being a part of the community truly is and what does to promote and accelerate research.



Everyone should take a bow! Keep plugging in in whatever way suits you best. It does matter.

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