Next month we're headed to New York City to attend a fund raiser and educational symposium for The Coalition for Hemophilia B.
I found the Coalition when #1 was four months old. There was an article in a now defunct publication (Hemalog) about the father of a young boy with Hemophilia B who was frustrated by the lack of information, support, and research into Hemophilia B specific issues. John Taylor and his wife founded The Coalition for Hemophilia B in an effort to fund research and support for our community.
From the time #1 was born and subsequently diagnosed with severe hemophilia B, I'd been frustrated by the lack of hemophilia B specific information.
[Patients who live with hemophilia B have a deficiency in factor 9. The most common form of hemophilia is factor 8 deficiency, or Hemophilia A. For comparison's sake, Hemophilia A affects about 1 in every 5,000 live births; hemophilia B affects about 1 in every 30,000.]
The fact that an organization was founded just for us "B's" is pretty cool. Those of us who are active in the Bleeding Disorders community have become like family. The Coalition for Hemophilia B has been instrumental in forwarding research in the areas of gene therapy and alternate treatment therapies for Hemophilia B.
Next month The Coalition is holding its second annual Education Symposium. Our family went to New York City to be part of 1st ever event last year and it was fantastic! I wasn't sure that we'd be able to attend the event this year...travel ain't cheap.
Our trip recently came through and we'll be attending the event! There's going to be a great fund raiser the evening before the Symposium and I've been asked to speak at the event. Very cool.
The boys...well, one of them anyway, is really excited. #2 is very much a city mouse and can't wait to stay on the 33rd floor right off Times Square! #1 on the other hand? He's not so crazy about elevators or crowds.
So, the next few weeks will be spent convincing #1 how much fun we're going to have and trying to keep #2 from packing every stuffed animal, the cat, and the two dogs in his luggage.
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2 comments:
I hope you have a great time. I'm so jealous! I've never been to NYC and would love to go.
(BTW, my kids are the same way. My daughter loves to travel. She has even flown by herself and loves everything about traveling. My son, on the other hand, would rather stay home than do almost anything. He didn't even like Disney! Sometimes I wonder if their opposite natures are a plot to drive me crazy!)
Oh, have fun! It sounds great. I grew up in Queens, and have always thought of NYC as a place to escape, but the Man assures me that it's fun to visit.
One of these days, we've just got to try this national conference thing...
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