2016 Runners and RARE community partners

RARE Community Partner RARE Disease Community  Boston or Providence 2016 Running Team 
Cassie (IMO) Niemann-Pick B B Anne Marie O’Connor Smith
Katie Prader Willi Syndrome (PWS) B Carolyn Ball
Grace (IMO) Hypothalamic Harmatomas (HH) B Jason Dunklee
Patrick Cyclic Vomiting Syndrome (CVS) B Justin Hopkin
Sam Vanishing White Matter Disease B Katherine Rogers
Max/Christian Familial Hypocholesterolemia B Kyriakos Economides
Madison Mucolipidoses II/III (ML Type II/II) B Lora Moore
Sarah Fibromuscular Dysplasia B Martha Stapels
Kristin undiagnosed B Maureen McLaughlin
Hayden/Tanner Mitochondrial Disease B Paul Driscoll
Steven Muckle Wells syndrome B Prajwal Karmacharya
Kylene Mast Cell Disease B Sarah Batchelder
Erica Mucopolysaccharidoses Type 1 (MPS 1)

Congenital Central Hypoventilation Syndrome (CCHS)

B Sarah Yang*
Erin Mucopolysaccharidoses Type 1 (MPS 1) B Trish Flanagan
Gina undiagnosed P Andrew Scholte
Eli Rothmund Thomson Syndrome (RTS) P Baydir Berrahal
Becca Mastocytosis/Erythemae Multifromae P Betsy Bogard
Shauna Rothmund Thomson Syndrome (RTS) P Emily Burke
Christie Klippel-Feil Syndrome (KFS)_ P Erin Santos
Emma Gaucher

Hypoparathyroidism (Jen)

P Jen Melanson*
Quinn (IMO) Niemann-Pick A P Kailene Simon
AJ Fibrodysplasia Ossficans Progressiva (FOP) P Kurt Swanson
Bertrand N-glycanase (NGLY1) deficiency P Kyle Kellinhaus
Noah Atypical Abetalipoproteinemia/Undiagnosed P Laura Benedict
Tara Mast Cell Disease P Nick Thurlow
Chris Congenital Hyperinsulinism (CHI) P Patrick Jones
Jennifer Phenylketonuria (PKU) P Rachel Benedict
Garrett Niemann-Pick B P Abigail Maderia
P Amanda Foisy*
Amanda Paroxysmal Nocturnal Hemoglobinuria P Matthew Maderia
Amanda Paroxysmal Nocturnal Hemoglobinuria P Michelle Flaherty
Tara gne-myopathy (HIBM) P Lori Chong
Andrew Cyclic Vomiting Syndrome (CVS) P Dan Wilkens
Lindy Metachromatic Leukodystrophy (MLD) P Roger Maderia
Kristine Idiopathic Inter-Cranial Hypertension (IIH) P Sofia Hu
John Eosinophilic Esophagitis (EoE) P Kelsey Hoontis
Abigail Hypogammagloulinemia/Common Variable Immune Deficiency P Jessica Colund
Heidi Leukoencephalopathy with Spheroids (HDLS) P John Sue
Amelia Congenital Hyperinsulinism (CHI) P Phillip Maderia

* Running Team member and RARE Community Partner

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