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Sunday, November 08, 2009

NHF Annual Meeting Wrap Up


Last week was the NHF annual meeting, held at the San Francisco Marriott. Beautiful location, beautiful city and lovely weather all made this a very nice meeting for all. The fact that it coincided with Halloween in such a spirited city made it fun for many attendees. Of course there were meeting to attend, things to learn. No surprises (unlike last year's meeting) and I was happy to see a big emphasis put on inhibitors this year. I attended the Grifols' sponsored symposium on inhibitors, and was able to hear my friends Janet Brewer and son Stephen speak, as well as Kerry Fatula, mother of four boys (three of whom have inhibitors). If nothing else, the meeting was worth it to hear them speak. What powerful stories! They go through more medical interventions in one year than Tommy and I have been through in his whole 22 years. This is a struggle faced by all families with inhibitors.

I was most happy to meet some folks from Medic Alert; our community uses their medical jewlery so often, it felt like meeting family! (See photo)

I gave a presentation on Saturday at the Baxter symposium, with the theme "Your Tomorrow Starts Today." It was fun to share the stage with John McNeil, a young man with hemophilia getting his medical degree, who also happened to be Tommy's counselor back at hemophilia camp! Social worker Terry Hammink (University of Minn. medical Center) did a great job moderating the morning. We were saddened only that Ellis Sulser, a top advocate in our community, could not join us as planned, due to his health.

I saw a lot of new families, and some long-time friends, some of whom I have not seen in 15 years! This is one of the great joys of our community, to know so many, to share so much with them, and to go through life together. No matter how many years have passed, a family with hemophilia is a family to us all forever. Congratulations to the NHF staff for once again pulling together a great meeting for our community.

After the meeting, Zoraida, my co-worker, and I took a day off with Paul Clement and his family (Paul writes for us) to visit Alcatraz, the infamous island prison in SF bay. It was historical, educational, and chilling. I highly recommend it to all; you'll not find many places like it.

Angie.... I still owe you that glass of wine!

Great Book I Just Read
A Long Way Gone: Memoirs of a Boy Soldier by Ishmael Beah
Zoraida gave me this book for my birthday, and I finished it in two nights. It is a gripping and tender story of an innocent African boy in Sierre Leone, whose idyllac life is torn apart by civil war when his village is raided and he is forced to become a boy soldier at age 12. He loses everything, his entire family, his innocence and even his memories as he is forced to survive and eventually commit atrocities against civilians and rebels alike. Eventually he is rescued by UNICEF, and he shares his painful rehabilitation without asking for pity. It is a harrowing account, and breathtakingly honest; Beah is an exceptional writer. There is a happy ending, though nothing can ease his lost years and innocence. A must read. Four stars.

4 comments :

Anonymous said...

What were the surprises at last year's meeting?

Laurie Kelley said...

See here!

http://blog.kelleycom.com/search?updated-min=2008-01-01T00%3A00%3A00-05%3A00&updated-max=2009-01-01T00%3A00%3A00-05%3A00&max-results=50

Anonymous said...

Dear Nathan Wilkes,
Thanks for that excellent synopsis. I too have been supporting HR 676, even before Patch Adams was here at the University of Illinois at Chicago to talk about it in 2007. There are a number of good hearted doctors who support HR 676. Now in 2009 I have heard and seen in person the Mad As Hell doctors. My son with hemophilia is 27. I worry about his future health care financing.
Jim O. in Chicago Nov. 12, 2009

Anonymous said...

I went to that site to review your report on the NHF meeting last year. Are you saying that the movie and commentary were surprises?

 
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