I visited Pittsburgh this past weekend to spend time with the families at the Western Pennsylvania Chapter of the NHF. What a fantastic event! Kerry Fatula, executive director, and her team did a marvelous job bringing together families from all over Western Penn for a weekend of education, socialization and fun. One thing that struck me right away was the high involvement of women and girls in this community: from girls with VWD to carriers and siblings. More than almost any other place I see that women have really become empowered in this chapter.
Now, I might be a bit biased, since Kerry is a good friend now and I’ve been to this event before and really enjoy this part of the country, but WPCNHF works hard to achieve its many goals for its families. The weekend started with a Friday evening dinner and excellent talk by Dr. Margaret Ragni, hematologist from the local HTC. I was impressed with her breadth of knowledge about the future of VWD and hemophilia. She spoke about current trials for longer acting VWD and factor VIII, and our chances of successful gene therapy. She spoke in easy to understand terms, despite the difficult nature of the subjects.
On Saturday we had a mix of speakers: Rob Dash of Baxter spoke about insurance reimbursement issues, on which he is an expert. I gave a talk about raising a child with hemophilia, summing up the various things we must learn and undergo in 20 years. In compiling this talk, I was a bit dazed myself reviewing how much we have learned and how far we have all come. My friend and colleague Diane Horbacz was here from HHS to give her “Karing for Kids” workshop, an excellent program that actively engages children in hands-on learning about hemophilia in a fun manner. Later on, Laureen Temple of CSL Behring spoke about blood clotting, and Virginia Kraus of Grifols (whom I’ve known for at least 17 years!) spoke about VWD. I ended the afternoon with my empowerment talk, which can be applied to hemophilia as well as many life circumstances. Many companies set up booths and consumers had the chance to visit with everyone and learn more about services and products. That evening was lively, with a full course meal and a very loud DJ with a selection of music that spanned from AC/DC to hip hop to disco. Something for everyone! And there are a few Bob Segar fans in the audience, and I have the incriminating video of Dawn and Rita to prove it!
I met some truly extraordinary families. Some needed coaching in dealing with tricky medical situations: what should they do, who to turn to? Others simply shared with me what they’ve been through. I was thrilled to see Guy, a young man with hemophiilia, who I have known through the years and watched grow up. Guy is special to me: his story was in my first edition of Raising a Child With Hemophilia, and many of you might recall his story. He suffered a devastating spontaneous head bleed as a baby. His mom’s quotation was the longest in the book, serving as a warning to families who instinctively know something is medically wrong with their baby, but who are lulled into thinking it’s only the flu, by families and even doctors! Thankfully, his mom persisted and Guy survived. Today Guy is an accomplished and lovely young man, so outgoing, so active, someone his mom should be very proud of!
Two other families stand out in my mind. One is Chris and Candi, a young couple, parents of a 16-month-old, who has severe hemophilia. In 16 months they have been through so much, and they handle it with grace, confidence and mastery. I wonder how such a young couple could be so empowered? They embody what empowerment means. Despite all the medical challenges they have come up against, they always find a way through it and learn from it. Also, I had a lovely three hour chat this morning with Mary and David, who have five children. Conor has type 3 VWD, which is severe. Again, they have learned so much, and never blaming others or cursing their fate; they simply and with dignity accept this life, learn from it and even find a lot of humor in their trials. As I often do when I visit with these families, I fly home feeling so lucky to have met them and to share a bit in their lives. And I hope we all meet again! Congratulations to Kerry and her team for a fabulous weekend!
Great Book I Read: Devil in the White City, by Erik Larsen. I always thought DisneyWorld was the embodiment of visionary thinking–until I read this book. The Chicago’s World Fair of 1893 became the spectacular dream come true at a time when nothing like it existed anywhere in the world. In a passion of patriotism and competition, it arose in the minds of two brilliant architects who wanted to outdo the French Exposition, where the Eiffel Tower was unveiled. With only two years, and hundreds of roadblocks including devastating storms, union strikes, and disease, somehow a magical “white” city arose from the mud of Jackson Field, and dazzled the world. What could compete with the Eiffel Tower? A man named Ferris stepped up with an idea for a huge spinning wheel. While this testament to the creativity and untapped potential of the human mind unfolds, the story simultaneously follows the depravity of the human mind, in profiling America’s first known serial killer. Larsen has a wonderful knack for paralleling stories and then bringing them together in the end as the stories historically collide. This book is simply amazing–learn about America during the industrial phase, the event that captivated the world, and a bizzare doctor/killer who stalked the visitors. And DisneyWorld? Well, it isn’t a coincidence that one of the carpenters hired to help construct the marvelous buildings was none other than Elias Disney, whose son Walt no doubt heard his father’s riveting stories about a magical kingdom! Four stars.