This past Saturday the HPS Family Conference Puerto Rico was held in Ponce. We estimate there were about a 100 people there. That number is down from previous years, however. There was a snafu with transportation and the conference didn’t receive as much media attention as in the past, thus these factors may account for the attendance drop.
Even so, the conference was a success. We found several people that might be candidates for some of the trials underway at NIH (although they’ll have to be evaluated further). We made some good contacts that we didn’t have before. The families that attended learned things they didn’t already know.
The outreach accomplished during the week was also wonderful. While the conference was taking place, Carman and Hilda slipped away to give a lecture to a class of forty master’s students studying special education. That went very well too.
Sometimes with these outreach efforts, it takes a little time for the results to filter in. We’re still getting folks filtering our direction from the outreach in Florida. Thus, it can be hard to put a number on how many people were reached right now.
There were some rough spots along the way, some last-minute problem solving, but everyone stepped up. We really want to thank the folks from NIH for all their patience during the week and for making the effort to be available for us. They don’t have to do that. When they give up a week, and a weekend, to be there for us it isn’t a job requirement and they’re choosing to give us some of their personal time that could otherwise be spent with their families. We really do appreciate it.
And I also want to thank Hilda. Hilda is the outreach queen. She’s a master at knocking on doors, asking lots of questions and figuring out what she needs to know. Maybe she was a reporter in a former life? He he he…just kidding.
And thanks to Richie and Ivette. Organizing an event is extremely stressful – and when speakers etc. cancel at the last minute it’s enough to make you want to lose your mind. Thanks to both of them for being willing to invest the time and energy into helping us find the cure.
And thanks to Donna for being away from home for yet another week and for always making herself unconditionally available and always focused on the goal – finding the cure.
And thanks to Carmen and Liz – both Spanish speaking board members who went along and were tons of help to Donna and the doctors by helping us bridge the language gap.
Now, onto the next outreach effort – Philadelphia!
Even so, the conference was a success. We found several people that might be candidates for some of the trials underway at NIH (although they’ll have to be evaluated further). We made some good contacts that we didn’t have before. The families that attended learned things they didn’t already know.
The outreach accomplished during the week was also wonderful. While the conference was taking place, Carman and Hilda slipped away to give a lecture to a class of forty master’s students studying special education. That went very well too.
Sometimes with these outreach efforts, it takes a little time for the results to filter in. We’re still getting folks filtering our direction from the outreach in Florida. Thus, it can be hard to put a number on how many people were reached right now.
There were some rough spots along the way, some last-minute problem solving, but everyone stepped up. We really want to thank the folks from NIH for all their patience during the week and for making the effort to be available for us. They don’t have to do that. When they give up a week, and a weekend, to be there for us it isn’t a job requirement and they’re choosing to give us some of their personal time that could otherwise be spent with their families. We really do appreciate it.
And I also want to thank Hilda. Hilda is the outreach queen. She’s a master at knocking on doors, asking lots of questions and figuring out what she needs to know. Maybe she was a reporter in a former life? He he he…just kidding.
And thanks to Richie and Ivette. Organizing an event is extremely stressful – and when speakers etc. cancel at the last minute it’s enough to make you want to lose your mind. Thanks to both of them for being willing to invest the time and energy into helping us find the cure.
And thanks to Donna for being away from home for yet another week and for always making herself unconditionally available and always focused on the goal – finding the cure.
And thanks to Carmen and Liz – both Spanish speaking board members who went along and were tons of help to Donna and the doctors by helping us bridge the language gap.
And last, but certianly not least, thanks to Jose. Jose is the guy who schedules all of our appointments at the NIH, makes sure we can get our airline tickets, coordinates Hector the cab driver's services etc. But Jose does much more than that. He gets to know the patients. He could easily avoid doing that, but he makes the effort, spends time with them when they're at NIH etc. He also went to Puerto Rico. Those kinds of relationships are so important to our patients. We really appreciate the fact that Jose recognises the need to do that and to go the extra mile.
Now, onto the next outreach effort – Philadelphia!
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