rare disease – Page 3 – Natalie Abbott

This is a song, for all the good people…

http://www.youtube.com/watch?v=3-2gacuKX4c

NIH Director Dr. Francis S. Collins at the 10th Moebius Syndrome Conference

Honestly my favorite part of the 2012 Conference. I totally teared up. Hope he can make it again to DC this year.

Today is Rare Disease Day, and this song sums it all up for me quite succinctly. It’s about the people I’ve met and continue to meet due to my rare disorders. They transformed my life, gave me my sense of self, connected me to the amazing CCI world… and so much more. I look forward to what else is in store for me on this journey.

Moebius Syndrome Awareness Day

I think that the best sort of awareness is spread quite unintentionally, just by living my life and sharing with people who know me and want to know my story.

Every once in awhile, though, a big awareness day thingy makes me happy to be part of this community. It’s amazing how diverse and varied we all are, brought together by chance and through social media.

For more information on Moebius syndrome and MSAD, see http://is.gd/WhatIsMoebius and http://is.gd/MSAD2014.