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A weekend at the home office

Picture to follow: Blogger isn't letting me import images again! Grrr....

Oh what a weekend! I spent the weekend at the Hermansky-Pudlak Syndrome board meeting. It was a great meeting. Everyone seemed to work well together and feed off of one another. Everyone had something to contribute and we got a lot of work finished!

We did the typical things that boards do. We reviewed our budget, reports from our financial advisor etc. We discussed the future vision of the organization, goals for research initiatives etc. We reviewed our affiliations with other organizations such as the Genetic Alliance, NOAH, American Thoracic Society and others. You might call it the business end of managing a non-profit.

We also spent quite a bit of time discussing the conference, possible presentations, how it should be organized, how we should all communicate beforehand to bring it all together and take as much of the load off of Donna as possible etc. I’m going to hold out on some of those details for now because we need to ask the speakers before we go advertising their presentations (grin!).

Our newsletter just went out, and we discussed various ways of adding some additional content and breaking up the work a bit so I can get more help on that end. Frankie, our translator, and I also had a chat with the printer to discuss what he needs and how we might reduce some of the costs.

We also had a lot of discussion about the work the Puerto Rico branch is doing. They really do have a lot going on, and it gives me hope that we might actually meet our numbers for the drug trial. Ivette and several other HPS’ers in Puerto Rico got featured on an hour-long radio call-in program this morning.

Ivette attended a medical conference in Puerto Rico this past weekend where she was allowed to set up a table. She got 20 referrals of people who have HPS and pulmonary fibrosis, so now we’ve got to work through and process those leads.

On Sept. 30th the Puerto Rico branch is sponsoring the first annual HPS Family Conference in Puerto Rico. They’re having a kind of health fair of sorts. There will be food and entertainment. The docs from NIH are flying down to give presentations to the medical community as well as the patient community. Dr. White, who performs the HPS screening test, has sent a box of test tubes to do blood draws for testing and I understand there will also be pulmonary function testing on site. The folks in Puerto Rico are expecting about 200 people. That’s truly exciting!!!! I can hardly wait to hear how it all goes!



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