Tag Archives: mps

Charlotte’s Ride 2018

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Please consider joining us AUG 5th 2-4pm for Charlotte’s Ride 2018 – Last year we raised over $5,000!! Lets beat that in 2018! Hanson Athletic Association 171 Reed St, Hanson, Massachusetts 02341 All up to date cruise details are posted Charlotte’s Ride Any questions: CharlottesRide@gmail.com or post here #CharlottesRide #CharlotteStrong #MPS #MP1 #HurlersSyndrome #SmashOutMPS #GoHarken #CrushitChristopher […]

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Meet Charlotte

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“Our 9 month old granddaughter Charlotte Condon, daughter of Kim O’Kane and Christopher Condon was born with a very rare and severe genetic disorder called Hurler Syndrome or MPS1, in which her body doesn’t produce the enzyme it needs to break down specific sugars. This affects every aspect of Charlotte’s poor little body – literally […]

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Happy 4th Birthday Bear!

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Happy 4th Birthday BEAR!

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Christopher’s Inaugural Pumpkin Smash 2015

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Mr.Christopher’s Pumpkin Smash Please participate in the inaugural Mr.Christopher’s Pumpkin Smash, to help “SMASH OUT” MPS! It’s easy! All you have to do is: 1-buy a small sugar pumpkin 2-paint it purple 3-Friday, October 16th video tape you or a family member smashing your purple pumpkin! 4-Give a brief explanation of what you are doing […]

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ONE YEAR!

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One year ago today, Harken was diagnosed with MPS-1, Hurler’s syndrome. Now today represents the news from the doctors that Harken is healthy enough to come out of quarantine. We are so proud of this beautiful baby girl and are so thankful for each day!!

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Home Sweet Home!!!

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Not only was yesterday National MPS Awareness Day, but the doctors said Harken was strong enough to go home! We are so happy and thankful to have our family under the same roof. Although her journey is far from over, we feel truly blessed. Love you Bear!!!!

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