I attended a great event over the weekend--the Novo Nordisk Inhibitor Summit in Baltimore, Maryland. About 45 families with inhibitors attended this private event to network with each other and to learn more about inhibitors. This is the fourth one I have attended since they were inaugurated last November, and I think they are one of the greatest things happening in our community right now.
Guest speakers included Val Bias (patient advocate) of San Francisco, Dr. Guy Young of California, Dr. Barbara Konkle and Regina Butler, RN, of Pennsylvania, Ed Kuebler, LMSW, Dr. Ed Heller, Angela Forsyth, PT and Dr. Prasad Mathew of New Mexico. Great speakers and experts. Topics included: an inhibitor overview, treatment options, surgery, and exercise and sports.
A wonderful dinner was held the at world-class Aquarium where families were happy to chat with each other all night, grazing on great seafood and gazing at a huge submarine parked right next to the outdoor pavilion where we dined! I was lucky to sit and swap stories with some friends from Massachusetts.
Unusual for our community, the event is not a venue to market products or services. You see no promotion of NovoSeven. Novo Nordisk sales staff are not allowed to attend. The event is managed by a third party, Cadent Medical, so you never feel that you are being marketing to. Another Summit is being held in Chicago on October 28, and if you have an inhibitor and have not been able to attend so far, you are most welcome! Some travel grants will be available to eligible individuals. Please call (888) 706-6867 for more information or check out www.inhibitorsummits.com. Don't miss it!
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Friday, September 15, 2006
Welcome to LA Kelley Communications, and to our first blog. Many of you may already receive our books, newsletters, and emails. This blog will be a more timely and personal way to share what is happening in the bleeding disorders community. I'll be like a reporter with my postings: I'll share with you what I observe on my visits to chapter meetings, symposia I've attended, feedback I have heard. Many of you ask about my humanitarian missions to the developing world--this will be the place where I will share my impressions, agendas and photos.
We've had a very busy summer, with meetings all across the country. Many times I wished I could have shared immediately with you all what I learned and what I saw. Now I can! We like being "first of a kind" in what we do, and this could be one of the first professional blog sites in the hemophilia community. I will try to update the blog weekly, on Mondays. I hope you will visit us regularly and learn more about what is happening in our community from the eyes and ears of someone who cares deeply about our future and about our chidlren.
Posted by Laurie Kelley at 12:47 PM