Novo Nordisk

Inhibitor Summit in San Diego

Laurie Kelley July 23, 2007


I am in California all this week and just spent the weekend in San Diego at another great Inhibitor Summit, this one with a record number of attendees from across the US. The energy at these events is tremendous, and the parents and patients are actively involved in all sessions. I was glad to see many people returning from last year, which made this very much like a reunion of friends.

Friday began with a wonderful review of inhibitors by Susan Karp, RN (University of California, San Francisco), who is well known and respected in our community. In the evening after dinner, a fun yet insightful icebreaker by Heather Huszti, PhD, a psychologist who works with families with hemophilia, who had quite a few fans in the audience. The activity taught us a lot about teamwork.

The Main Event on Saturday was chaired by Dr. Guy Young, now based in Los Angeles, who also gave us an overview of treatment strategies. And an incredibly inspirational talk was given by 23-year-old Rich Pezzillo of Rhode Island, whom I am honored to call my friend, about his experiences with inhibitors from age 18 to age 23. Rich has suffered tremendously and faced many hardships in the last five years, but it has only strengthened his resolve to live life to the fullest and deepened his faith. His speech really set a positive and uplifting tone for the day.

There were sessions on venous access, diet, surgery, parenting, transition and ITT. The day ended with a great educational talk by Nathan Wilkes of Utah, who has a son with an inhibitor, on what he has learned about advocacy.

See photos of the event here.

Well, the day didn’t actually end there. It ended with an amazingly fun celebration, under a covered tent, with a traveling petting zoo for the kids–complete with monkey, chinchilla and tortoise. And for the grown ups? Karaoke and dancing! Wow, do I have some incriminating photos of some of our community members! Only half kidding, just some memorable shots of dear friends having a great time. I do recall: Matt Compton and Gar Park singing “I Wanna be Sedated”; Chris and Leland Smith rapping “Walk This Way” a la Run DMC/Aerosmith with Ezra Robison; Shuantaye belting out some amazing Beyonce; Eva cutting some amazing dance moves; Eva, Shantaye, Doreen and the ladies looking like “Dreamgirls”; and everyone (me included) doing the electric slide! It was a wonderful time and we all thank Novo Nordisk for sponsoring this fabulous event that not only educated us, but brought us together to make happy memories and new friends.

I have the greatest admiration for families with inhibitors and what they endure, and am impressed with their exceptional medical knowledge. Congratulations to them all for their perseverance, fortitude and achievements!

Next Summit? In Dallas, October 6. Check out www.inhibitorsummits.org to see if you qualify to attend. I hope to see you there!

Hiroshima: Center of Peace

Laurie Kelley June 10, 2007
Tomorrow I fly home and conclude a wonderful trip to Japan. Yesterday in Hiroshima, before I gave my presentation, I had time to slip out to the Peace Museum. This expansive, eerily quiet edifice preserves the memory of those killed on August 6, 1945, when the first atomic bomb was used. Inside, Yuko and I read in hushed silence what life was like in Hiroshima the morning the bomb fell, and the devastation that followed. The museum has recovered the actual clothing of some of the children who died in the attack, and most notably several watches, with hands frozen at 8:15 am, when the bomb struck. It was hard to sit through the 30 minute opening film without tears filling our eyes, viewing how the victims suffered. Hiroshima has since become the epicenter of a world peace movement, and every mayor since 1968 has written to world leaders whenever a nuclear weapon is tested, urging them to stop the spread of nuclear weapons. The photo above shows the A-Bomb Dome, now a World Heritage site, which is all that remains of a building near the hypocenter of the blast. It was also about the only thing left standing in the city.

Later, I presented to an audience of 123 hematologists and nurses what hemophilia is like in the US, and how patient involvement and early intervention can make life with hemophilia more normal. Doctors are highly revered in Japan, and ironically this can make patients/parents both comforted and complacent, leaning too much on their medical team’s expert advice.

With any chronic disorder, patients and parents must take charge of their own daily life and future. The role of homecare companies was a new one to the doctors and nurses, and at the reception that followed, we discussed how this has improved medical care on the US. Currently Japanese families are prescribed factor through their physician and pick it up at a local pharmacy. It was stimulating to speak to such a high-powered audience, and though role playing was on the agenda for the evening (where doctors would switch professional roles with me or their nurses and enact some real-life scenarios to see how they react), we simply ran out of time. I heard more than a few “whews!” in the audience!

View all the photos from the trip here. 

(Photos: A-Bomb Dome; Hiroshima on August 6, 1945; Laurie with Japanese hematologists; Laurie with her hosts, Novo Nordisk Japan)

Inhibitor Summits 2007

Laurie Kelley March 5, 2007

Many people have been asking us about the Inhibitor Summit meetings that were so successful and useful in 2006. They are now scheduled in 2007. Sponsored by Novo Nordisk, these are really the only meetings that are truly addressing the need of patients with inhibitors. Here’s the schedule:

May 18-19 Nashville, TN
July 20-21 San Diego, CA
October 5-6 Dallas, TX

For more information, visit www.inhibitorsummits.com or email us, and we’ll update you. If you are a family or patient with inhibitors, you may qualify for free airfare and hotel! I’ll also be attending and look forward to seeing you there!

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