2013 Runners and RARE Community Partners

April 15 2013 - Genzyme Marathon - 039


Runner Location Patient Partner Disease/Information
Jessica Colund Cambridge Erica MPS1
Sharon Cotnam Allston
David Cunningham Waterford Ryan ALD
Colleen Dalton-Petillo Framingham Cobalamin C Deficiency
James Drob Swiftwater Emma and Maddie Pompe
Kyle Kellinghaus Cambridge Morgan Mastocytosis
John Koltvedt Michigan Donnie Rubenstein-Taybi Syndrome
Phillip Maderia Allston Wylder Neimann Pick A
Sean McShera Cambridge Kyle Hunters Syndrome
Cian O’Brien Waterford Ethan ALD
Jack Prior Framingham Brianna Heriditary Spastic Paraplegia
Kristin Rapp Kensington, MD Will Homocystenuria (HCU)
Andrew Scholte Waltham Kristin Cowden Syndrome
Kailene Simon Framingham Gail Idiopathic Hypoparathyroidism
Jennifer Tedstone Framingham Ben and Christopher Congenital Hyperinsulinism International
Lisa Valaika California Gaby APS Type 1
Daniel Wilkens Allston Sean Kugelberg Welander Syndrome
9 comments on “2013 Runners and RARE Community Partners
  1. Shane James says:

    Thanks so much Phil, and every member of the Genzyme team !!! I will now be able to run in the 115th Boston Marathon, to raise awareness for SPS. Hope training is going well, and to meet the team. Cheers

  2. Michael Stanzione says:

    Thank you Frank for running on my behalf. It was an honor to be represented by you and Genzyme. Let’s keep up the fight to find a cure for Pompe disease.

  3. Meaghan says:

    I want someone to run for POLYMYOSITIS my rare muscle disease. I have pain level nine everyday of my life. So If someone can’t run for me would like donation.

  4. Monique Griffin says:

    I’m so excited to be a Patient Partner again this year! It was great meeting Kai last week – what an amazing athlete! Thank you everyone for all you do and thank you for running for those of us who no longer can. Hope you have better weather on the day of the Marathon than you did for the relay.


  5. Christian says:

    Thank you Dan for running for HoFH. I can’t thank you enough for everything you are doing to help raise awareness for homozygous familial hypercholesterolemia. Like the others have said, it is an honor to be represented by you and Genzyme. Looking forward to race day 🙂


  6. Shane James says:

    Hope training has gone well, looking forward to the big one. Such a thrill to be a part of the Genzyme team. Thx

  7. tanayamolzan says:

    hi venkat,

    thank you for running for me and Cornelia de Lange (Cdls) Syndrome. run strong.

    ps go go venkat

  8. Shane James says:

    Hi Guys,
    Thanks so much for being a part of the Genzyme team ( running for rare diseases ) can`t thank all of you enough, words just don`t seem to cut it !!! Thanks Jay for the oppertunity to run with Greg in the blue hills, fab trail run. Phi for all you have done for me, meeting Dean Karnazes was awesome so motivating thx !!! Will help take my training to another level.
    Dan !!! Well you know how I feel, helping me through the marathon and to finish how we did was so special, there is a great pic of both of us in marathonfoto.com under my entrant. I will get over my fear and tell my story, the Genzyme team have change my life to be honest helped save my life. I`m so gald we have met not for running the marathon but for the connects. I love the energy that the Genzyme team give you are all very special people, thanks so much for having the oppertunity to be a part of something so fantastic.

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