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 uplifiting 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.
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 tortise. And for the grown ups? Karoake 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!
(Photos: Ziva Mann of Massachusetts and son Akiva; Laurie with long-time friends the Elkurds of Ohio; “Dreamgirls”; Laurie Kelley and good friends: Pattie Huerta, Barbara Chang and Linda Clement; Leland and Chris Smith as Run DMC, and Ezra Robison as Steven Tyler?)