I had the distinct pleasure of attending the FPWR Conference Breaking Boundaries last week in San Antonio, Texas. First off, let me say I should have paid more attention in my science classes because the most amazing research is being done to address the many complex and different challenges faced by people with PWS. I was blown away by the passion, the commitment and the genius of scientists, professionals and family members gathered together. This was a wonderful opportunity to meet new friends and colleagues as well as meet, in person, some Facebook friends from the PWS community.
I learned a lot. The presentations ranged from the very scientific to the very practical. I know more about Ghrelin now than I ever knew, or knew I had to know. I heard about the role of small pharmaceutical companies and the impact they can have on our loved ones. I found out the diverse research grants coming up and I am personally very excited to hear more about the Global PWS Registry. Dwindling grants and flat funding from governmental agencies makes this work all the more challenging. As with all worthy causes, the funds will never meet the demand so being smart and strategic with the grant money is critical to the over-all success of the Foundation’s investments.
My head (and my heart) was jam-packed with all that was going on but as an admittedly “non-scientific” educator, the keynote speech by Special & Para Olympian Meagan Michie was one of my favorite moments. Hearing Meagan describe her life and her journey to gold medals in swimming was inspiring. I am left with her comment on growing up in Canada; “Can’t is a four letter word in our house”. Thank you Meagan for your story and thanks to FPWR for such a great conference!