". V C [essi Colund(Genzyme ) with Eri ca Thiel(lVIPSI), during her ExtraordinaryExperience trip to Boston. I've always thought there is nothing quite likebeing around other people who understand what a rare disord er is like, either because they live with a disorder themselves, work in the field or have family who are affected. Though none ofthese things guarantee otheraffected people "really get it," most do, a feeling that can h ardlybe ex plained and most not in the rare disease communit y can't understand. To me, MPS has re presented something more-a chance to help others realize there is more to life than the next " big toy" orthe next bigjo b promotion,but instead there is a certain joy in finding the small things in life, tryin g to enjoy the goodness in thosepeo ple who want to help and finding the good in bad situations. I recently had the chance to workwith Genzyme's Running forRare Diseas es team whosepurpose is to raise awareness of rare diseases and to raise funds forth e National Organization for Rare Disorders (this year to create a program focusing on early diagnosis). I feel theprog ram is much needed and will be wonderful, especially to help those who have symptomsbut who may not h ave "classicallypresenting features." I waspaired with Jessi Colund, a communications s pecialist at Genzyme, who was running the Boston Marathon forthe first time this year. We got to know each other over th epast few months leading up to marathon weekend. It was only in talking with nurses while h aving a shunt surgery earlier this s pring that I decided to fly to Boston. The nurses thought I should do it, es pecially because, "How many chances do you get to be around other people who understand?" I knew as soon as I was on theplane that I had a bsolutely made thebest decision in deciding to go to Boston and join the patientpartners and our marathon team forall 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 isbottled) where the Saturday night marathon dinnercelebration wasbeing held. Wejoined the rest ofthe runners,partn ers and families in attendance for a really great night with old friends, new friends and a general sense of"this is where I belong." continucd:>:>
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7/28/2019 (Boston Marathon) MPS Society 'Courage' Article
[ 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."
c ontinucd :>:>
7/28/2019 (Boston Marathon) MPS Society 'Courage' Article