Living on the frontlines

Honestly, this blog is for something besides the Hundred People Search, but we added another new person to the registry today (besides the one I mentioned this morning.) So, now we are at 61 to go on the Hundred People Search. 

We've added another new HPSér to the patient registry. That puts us at 62 to go on the Hundred People Search! 

Telemundo in Puerto Rico covered Hermansky-Pudlak Syndrome on the 5:00 pm and 10:00 pm news, Feb. 19, 2013. The story explained the syndrome as well as introduced the public to several people with HPS living in Puerto Rico. It was an awesome outreach event. See the video at: http://www.telemundopr.com/telenoticias/videos/Puerto-Rico-Capital-mundial-del-albinismo-191729151.html?m=y&smobile=y&clmob=y&c=n

I really do intend to post something besides the Hundred People Search on this blog! It's just that I've been so busy, and it's been a busy week for adding new families to the registry. (And, it's only Tuesday!) Today, we added another two people to the registry - putting us at 63 to go on the Hundred People Search this year. 

This past weekend has been a big one for the Hundred People Search! This morning the office tells me  we've added four new HPS'ers! And, they are not all from the same family - grin! This puts us at 65 to go on the Hundred People Search!