2014 Runners and RARE Community Partners

team-2014

 

 

Donation pages for each of the runners along with their stories are on razoo.com.

Name Site Patient Partner Condition Location
Dan Wilkens Allston Amanda Paroxysmal Nocturnal Hemoglobinuria (PNH) MA
Pat O’Sullivan Allston Chris Congenital Hyperinsulinism MA
Kuber Sampath Framingham Sienna Fibrodysplasia Ossificans Progressiva (FOP) NY
Andrew Scholte Waltham Emma Gaucher Germany
Jack Prior Framingham Brianna Hereditary Spastic Paraplegia OH
Kristin Rapp Patient member Will Homocystenuria (HCU) PA
Louis Rivoirard Cambridge Grace (IMO) Hypothalamic Harmatomas CA
Colleen Dalton-Petillo Framingham Sienna Hypothalamic Harmatomas MA
Jared Marshall Allston Mark Hypothalamic Harmatomas MD
Chris Bentis Framingham Gail Idiopathic Hypoparathyroidism MA
Marissa Poole Cambridge Natali Jackson-Weiss/Pfeiffer Syndrome MA
Pete Smith Friend/Family Gina Langerhans cell histiocytosis (LCH) MA
Nick Thurlow Friend/Family Tara Mast Cell Disease NY
Lisa Valaika California Hayden&Tanner Mitochondrial Disease AZ
Jessi Colund Cambridge Erica MPS1 WI
Rob Cook Framingham Patrick Cyclic Vomiting Syndrome (CVS) CO
David Cunningham Waterford Andrea&Eileen MS NJ, Ireland
Cian O’Brien Allston Heather MS WI
Sean McShera Cambridge John MS FL
Kai Simon Framingham Quinn (IMO) Niemann Pick A NY
Phil Maderia Allston Wylder(IMO), Mylee(IMO) Niemann Pick A,Mitochondrial Disease AZ
Shariq Ali Cambridge Melissa Higgins Niemann Pick B NC
Beth Songer Framingham Shauna Sperou Rothman Thomson Syndrome (RTS) MA
Kelsey Hoontis Allston Eli Ramirez Rothman Thomson Syndrome OK
Sharon Cotnam Allston Victoria(IMO) Rothman Thomson Syndrome VA
Rebecca Koltvedt Friend/Family Donnie Rubenstein-Taybi Syndrome MI
John Koltvedt Michigan Donnie Rubenstein-Taybi Syndrome MI
Rena Baek Framingham Candace Scleroderma CO
Shay Zukowski Allston Gracie Shwachman Diamond Syndrome MA
Shane James Patient member SPS Patient Stiff Person Syndrome Australia

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