As a 9th grade Algebra teacher I field the question, "When will I ever need to know this?" frequently. Honestly, most people will not need to know everything they learned in algebra down the road BUT what I also tell them is that you never know what you'll need to know. Life can send you down paths you never knew exisisted and into roles you never thought you would have to fill. Learn everything you can when you can because you never know where the road may lead.
Obviously having a child with PWS has lead me down a road I wasn't expecting and life has turned in a direction I couldn't have predicted. I am doing things that I never dreamed would be in my future. I never thought I would need to know so much about calories, carbs, proteins and portion sizes. I never thought I would need to know what the word hypotonic meant or how to inject growth hormone into my child. I didn't think I would need to write donation request letters or how to run a fundraiser. I certainly never thought I would have to figure out how to apply for medicaid or write a blog for that matter.
Last month I attended a conference about rare diseases of children and 'networked' with some very smart people. One of those people was James Heywood, the founder of Patients Like Me.
"PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care."
In about an hour I have a teleconference with James Heywood. I hope to learn more about his company and how to better push research forward for Prader-Willi Syndrome. I never thought I would be preapring for a meeting with the founder of an online company to learn more about genetics testing, biobanking and using the collection of medical information to guide pharmaceutical company decisions. Actually, I dropped biology my first semester of college as I would never need to know that stuff - ooops:)
