(Boston Marathon) MPS Society 'Courage' Article

7/28/2019 (Boston Marathon) MPS Society 'Courage' Article

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[ essi Colund ( Genz yme ) with Erica T hiel ( l V IP S I ), dur ing her E xt r aordinar y Experience trip to Bost on.

I've always thought ther e is nothing quite lik e being around other people

who under stand what a rare disorder is lik e, either because they live with

a disor der themselves, work in the field or have family who ar e aff ected.

Though none of these things guar antee other aff ected people "r eally get

it," most do, a feeling that can hardly be ex plained and most not in the rar e

disease community can't under stand. To me, MPS has r e presented something

mor e-a chance to help other s realize there is mor e to lif e than the next

" big toy" or the next bigjo b pr omotion, but instead there is a certain joy in

finding the small things in lif e, tr ying to enjoy the goodness in those peo ple

who want to help and finding the good in bad situations.

I r ecently had the chance to work with Genzyme's Running f or R are Diseases

team whose pur pose is to r aise awareness of r ar e diseases and to r aise funds

for the National Or ganization for R are Disorders (this year to create a

program f ocusing on early diagnosis). I f eel the program is much needed

and will be wonder f ul, especially to help those who have symptoms but who

may not have "classically pr esenting f eatur es."

I was pair ed with Jessi Colund, a communications s pecialist at Genzyme, who

was r unning the Boston Marathon f or the fir st time this year . We got to know

each other over the past f ew months leading up to mar athon week end. It was

only in talking with nur ses while having a shunt sur ger y ear lier this s pringthat I decided to fly to Boston. The nur ses thought I should do it, es pecially

because, "How many chances do you get to be around other people who

under stand?"

I knew as soon as I was on the plane that I had a bsolutely made the best

decision in deciding to go to Boston and join the patient partners and

our marathon team for all the f estivities. Soon after landing, Jessi and I

found each other and it f elt lik e someone I had known for ages, which

was wonderful! We made our way to Genzyme's manuf acturing facility in

Allston (coincidentally where Aldur azyme is bottled) where the Saturday

night mar athon dinner celebr ation was being held. Wejoined the r est of the

runners, partners and f amilies in attendance f or a r eally great night with old

f riends, new friends and a general sense of "this is wher e I belong."

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» After ward I went home with Kathleen Coolidge f r om Genzyme whom I've

met many times bef ore at var ious events. She happens to live near the MPS

III

family I was staying with for the weekend. Once again being with]enn and

her f amily was just another sense of "home with f r iends." ]enn and her

family

ar e one of the nicest, most gr acious families I k now.

Monday mor ning br ought a sendof f to our runner s while us patient par tners

made our way to the Genzyme meeting s pot at mile mar k er 14 to wait for

our

r unner s to pass by. There is nothing that can ex plain the feeling in the air

that day, the f eeling we wher e surr ounded by others who where on the same

jour ney, albeit with dif ferent disor der s, ex per iences and stor ies, and for

some

dif ferent outcomes. We were all united to raise awar eness collectively of

what

"rare" means, what it means to come together (es pecially poignant given the

outcome of the mar athon) and what it means to stand side by side no matter

your dif f er ences, because we all had a mission: to cheer our r unners and see

a day wher e none of us would lose a child, none of us would have to

under go

dozens of sur geries and none of us would have to bear the heartbreak of no

tr eatment option and continued pr ogression des pite a treatment option.

Although the end to the mar athon was incredi bly hear tbr eak ing, I think it

brought all of us on this year 's 2013 Genzyme Boston Mar athon team alittle

closer , and ser ved as another reminder of how shor t and unpr edicta ble lif e

is. Genzyme had given many of us VIP passes to the bleacher section of the

mar athon finish line which was directly across f r om the bombs. I am

gr ateful

I had a guar dian angel that day who k e pt me f rom using this pass. I am

especially gr ateful our r unners were all saf e. I am gr atef ul I had the chance

to experience this week end to thank those who helped mak e the week end

a reality (Jess, Genzyme, my employer ,]enn and her family and the

MPS

Society'S Extr aordinar y Ex periences progr am). Thank you!

Ou:avS/U (MPS I)

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m l . t o r .) Sheil a and J ohnny ( M P S I II )

T hornt on, H unt er Bennett ( MPS III ) , S cotty Whit ecotton ( MPS II ), Tod d J ohnson , C iara Bennett

( M P S I II ). On firet r uck K assi ( MPS Il l ) and T yler O f f enbadier .

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(Boston Marathon) MPS Society 'Courage' Article

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