This week is a big week in HPSland. This coming weekend is the second annual HPS Family Conference in Puerto Rico. I can’t tell you how much I wish I was there. Just as they did last year, HPS Network Puerto Rico has done an awesome job generating media interest and putting the conference together.
It’s also an exciting conference because nearly all of our doctors from NIH will be there. That is a real testament to their commitment to us – I know it wasn’t easy to make that possible. A very special thanks to Dr. Gahl, Dr. Markello, Dr. Guchicco, Dr. Merideth and Dr. Yao for being willing to invest so much of their personal time on this project.
Kevin, our nurse practitioner, and Jose, the scheduler a.k.a translator, a.k.a problem solver (think Radar and Clinger from M.A.S.H.) have been in Puerto Rico since this past weekend. They’ve been traveling the island with Hilda, a nurse who has worked with the HPS patients at NIH for years. She retired last year and now works with us as a volunteer, but ironically, I think she’s working more hours as a retired volunteer than she did when she was fully employed at NIH. The trio, from what I hear, have been doing interviews, visiting families from house to house, etc. trying to educate people about Hermansky-Pudlak Syndrome, its risks and the research underway. (A big thank you to all of you!)
Another exciting development is that some of our HPS troupe will be visiting a medical school in San Juan on Thursday to talk to the medical students about HPS.
We are also very excited that our doctors-only evening, and the family conference on Saturday, are generating a lot of registrations from doctors. Somehow, it was worked out that the doctors will be able to receive continuing education credits for their attendance. Since they’ve got to have their credits for the year in by November, there’s been a lot of interest.
Lastly, a very special thanks to Ivette for working so hard on this conference.
I was thinking the other day about a friend of mine that was disappointed she was unable to participate in one of the trials, and another who was working on a fundraising project, and another who has connected to a newly-diagnosed family and is trying to offer some moral support, and so many others. I was thinking about how much the HPS Network is like the concept of the body of Christ. (I hope no one is offended by that comparison.)
There are no unimportant parts of the body. There are a lot of down sides to having an ultra rare disorder, but perhaps one of the up sides is that we can all gain such a sense of empowerment by playing what ever role our talents best fit. Some of us are the toes, others the legs and others the arms. We all depend on each other. Some of us are best at fundraising. Some of us are best at supporting the people who are good at fundraising. Some of us are writers and are helping to document the story of what it’s like to live with HPS. Some of us bring an astute sense of business to helping the Network run. Some of us are great at generating new ideas, while others are better at keeping track of the fine details to make a project happen. Some of us are great at being a caring, listening ear for others. Some of us are good research candidates, and others have the spiritual gifts to pray for the Network and the needs of everyone involved.
It’s neat to watch people of such a varied background, with nothing in common but a wonky gene, come together, beat the odds and make great things happen.
One quick addendum – please pray for everyone’s safe travel on this trip. I grew up around airplanes. I not afraid of flying etc. Still, the idea of more than one of our doctors on the same plane, or in the same van etc. makes me send a few extra prayers up to heaven.
It’s also an exciting conference because nearly all of our doctors from NIH will be there. That is a real testament to their commitment to us – I know it wasn’t easy to make that possible. A very special thanks to Dr. Gahl, Dr. Markello, Dr. Guchicco, Dr. Merideth and Dr. Yao for being willing to invest so much of their personal time on this project.
Kevin, our nurse practitioner, and Jose, the scheduler a.k.a translator, a.k.a problem solver (think Radar and Clinger from M.A.S.H.) have been in Puerto Rico since this past weekend. They’ve been traveling the island with Hilda, a nurse who has worked with the HPS patients at NIH for years. She retired last year and now works with us as a volunteer, but ironically, I think she’s working more hours as a retired volunteer than she did when she was fully employed at NIH. The trio, from what I hear, have been doing interviews, visiting families from house to house, etc. trying to educate people about Hermansky-Pudlak Syndrome, its risks and the research underway. (A big thank you to all of you!)
Another exciting development is that some of our HPS troupe will be visiting a medical school in San Juan on Thursday to talk to the medical students about HPS.
We are also very excited that our doctors-only evening, and the family conference on Saturday, are generating a lot of registrations from doctors. Somehow, it was worked out that the doctors will be able to receive continuing education credits for their attendance. Since they’ve got to have their credits for the year in by November, there’s been a lot of interest.
Lastly, a very special thanks to Ivette for working so hard on this conference.
I was thinking the other day about a friend of mine that was disappointed she was unable to participate in one of the trials, and another who was working on a fundraising project, and another who has connected to a newly-diagnosed family and is trying to offer some moral support, and so many others. I was thinking about how much the HPS Network is like the concept of the body of Christ. (I hope no one is offended by that comparison.)
There are no unimportant parts of the body. There are a lot of down sides to having an ultra rare disorder, but perhaps one of the up sides is that we can all gain such a sense of empowerment by playing what ever role our talents best fit. Some of us are the toes, others the legs and others the arms. We all depend on each other. Some of us are best at fundraising. Some of us are best at supporting the people who are good at fundraising. Some of us are writers and are helping to document the story of what it’s like to live with HPS. Some of us bring an astute sense of business to helping the Network run. Some of us are great at generating new ideas, while others are better at keeping track of the fine details to make a project happen. Some of us are great at being a caring, listening ear for others. Some of us are good research candidates, and others have the spiritual gifts to pray for the Network and the needs of everyone involved.
It’s neat to watch people of such a varied background, with nothing in common but a wonky gene, come together, beat the odds and make great things happen.
One quick addendum – please pray for everyone’s safe travel on this trip. I grew up around airplanes. I not afraid of flying etc. Still, the idea of more than one of our doctors on the same plane, or in the same van etc. makes me send a few extra prayers up to heaven.
Comments