I (Went) Back to Michigan

That’s the name (sort of) of a Judy Garland song from the movie “Easter Parade.” And I went back to Michigan this past weekend, for the annual Springfest! The Michigan Hemophilia Foundation invited me to attend the showing of “Bombardier Blood” on Friday night. As I walked the long Marriott hallway to the conference room, I saw the stunning visual timeline, created by Shair Luckey, and realized that Ypsilanti, Michigan was also my first professional appearance in the hemophilia community, in 1991, six months after my book Raising a Child with Hemophilia was published (and my second child was born). How incredible was that! I promptly add my sticker to the wall on 1991, to become part of this rich history.

And the Hemophilia Foundation of Michigan has secured its place in history: it was the first hemophilia organization in the world to have a summer camp, Camp Bold Eagle! How about that for vision?

The movie was great–again! The audience was enthralled, and afterward we had a Q&A all about Save One Life. Of all the comments I made, the one that seemed to stick was the one about family life in developing countries. How strong families often seemed because of survival. There is typically no social welfare, no nursing homes; so family is all you have for a safety net. The eldest son is usually responsible for the survival of the family, and when that child has hemophilia, the entire survival of the family is cast into doubt. Save One Life, in helping one child, can then save an entire family. In the US, we are so used to being independent, that this concept seems rather foreign to us. So it was a revelation and I was asked about it again and again the next day.

On Saturday, Pat Torrey gave a lively and inspiring talk about finding your passion and dreams. Rick Starks gave Tai Chi demonstrations and classes. Dr. Steven Pipe, chair of NHF’s MASAC, gave his talk “Shifting Paradigms,” which I’ve known seen for the second time. Absolutely fantastic; all about understanding current therapies, new therapies and coming therapies. He is gifted in being able to explain very abstract and difficult scientific concepts into simpler terms, using analogies like Amazon.com and eHarmony! The audience rippled with laughter when Pipe described Hemlibra as being the “eHarmony” of hemophilia, bringing factor IX and factor X together to mimic factor VIII, and thus clot the blood. Who would have thought of blood clotting as a love story? The audience sat still and attentive for an hour, completely immersed in this great presentation.

And the positive talk continues about gene therapy. Present at the booths were Spark and uniQure, two companies with gene therapy in clinical trials. Exciting times ahead!

I was just content to reconnect with so many friends who I often do not have much time to speak with: Deena Maki, Vaughn Ripley, Rick Starks, Suzan Higgins, Dave Luckey. Great people doing great things. We are a community of true superheroes!

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