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[essi Colund (Genzyme) with Erica Thiel (lVIPS I), during her Extraordinary Experience trip to Boston.

I've always thought there is nothing quite like being around other people who understand what a rare disorder is like, either because they live with a disorder themselves, work in the field or have family who are affected. Though none of these things guarantee other affected people "really get it," most do, a feeling that can hardly be explained and most not in the rare disease community can't understand. To me, MPS has represented something more-a chance to help others realize there is more to life than the next "big toy" or the next bigjob promotion, but instead there is a certain joy in finding the small things in life, trying to enjoy the goodness in those people who want to help and finding the good in bad situations. I recently had the chance to work with Genzyme's Running for Rare Diseases team whose purpose is to raise awareness of rare diseases and to raise funds for the National Organization for Rare Disorders (this year to create a program focusing on early diagnosis). I feel the program is much needed and will be wonderful, especially to help those who have symptoms but who may not have "classically presenting features." I was paired with Jessi Colund, a communications specialist at Genzyme, who was running the Boston Marathon for the first time this year. We got to know each other over the past few months leading up to marathon weekend. It was only in talking with nurses while having a shunt surgery earlier this spring that I decided to fly to Boston. The nurses thought I should do it, especially because, "How many chances do you get to be around other people who understand?" I knew as soon as I was on the plane that I had absolutely made the best decision in deciding to go to Boston and join the patient partners and our marathon team for all the festivities. Soon after landing, Jessi and I found each other and it felt like someone I had known for ages, which was wonderful! We made our way to Genzyme's manufacturing facility in Allston (coincidentally where Aldurazyme is bottled) where the Saturday night marathon dinner celebration was being held. Wejoined the rest ofthe runners, partners and families in attendance for a really great night with old friends, new friends and a general sense of "this is where I belong."
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 Afterward I went home with Kathleen Coolidge from Genzyme whom I've

met many times before at various events. She happens to live near the MPS III family I was staying with for the weekend. Once again being with]enn and her family was just another sense of "home with friends." ]enn and her family are one of the nicest, most gracious families I know. Monday morning brought a sendoff to our runners while us patient partners made our way to the Genzyme meeting spot at mile marker 14 to wait for our runners to pass by. There is nothing that can explain the feeling in the air that day, the feeling we where surrounded by others who where on the same journey, albeit with different disorders, experiences and stories, and for some different outcomes. We were all united to raise awareness collectively of what "rare" means, what it means to come together (especially poignant given the outcome of the marathon) and what it means to stand side by side no matter your differences, because we all had a mission: to cheer our runners and see a day where none of us would lose a child, none of us would have to undergo dozens of surgeries and none of us would have to bear the heartbreak of no treatment option and continued progression despite a treatment option. Although the end to the marathon was incredibly heartbreaking, I think it brought all of us on this year's 2013 Genzyme Boston Marathon team a little closer, and served as another reminder of how short and unpredictable life is. Genzyme had given many of us VIP passes to the bleacher section of the marathon finish line which was directly across from the bombs. I am grateful I had a guardian angel that day who kept me from using this pass. I am especially grateful our runners were all safe. I am grateful I had the chance to experience this weekend to thank those who helped make the weekend a reality (Jess, Genzyme, my employer,]enn and her family and the MPS Society'S Extraordinary Experiences program). Thank you!

C e l e b r a t i n g C i a r a ' s 1 7 t h a n d H u n t e r ' s 1 5 t h b i r t h d a y s ( f r o

Ou:av S/U

(MPS I)

m l. to r.) Sheila and Johnny (MPS III) Thornton, Hunter Bennett (MPS III), Scotty Whitecotton (MPS II), Todd Johnson, Ciara Bennett (MPS III). On firetruck Kassi (MPS Ill) and Tyler Offenbadier.

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