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2015 Runners and RARE Community Partners

 

  1. 101 Running Team Members (23 – Boston Marathon, 1 – Kentucky Derby Marathon, 2- Paris Marathon, 80- Providence Half and Full Marathon – a few are doing more than one race)
  2. 93 Runner/Patient partnerships
  3. 58 Rare Disease Communities represented  (See Table below)
  4. Runners from 14 different states and 3 different countries
  5. Patient Partners from 19 different states and 3 different countries

 

Runner Site Patient Partner Patient Communities Race
Abigail Maderia Community member Shauna Rothmund Thomson Syndrome (RTS) Providence Half Marathon
Alan Sarto Community member Katie Frontotemporal Dementias  Providence Marathon
Amanda Bruno Community member Kimberly Mitochondrial DiseaseLupus Providence Half Marathon
Amanda Community member Paroxysmal Nocturnal Hemoglobinuria Providence Half Marathon
Amy Atwood Genzyme Center Jen Hypoparathyroidism Boston
Andrew Hegedus Bridgewater, NJ Allyson Vanishing White Matter Disease Boston
Andrew Scholte Waltham Emma Gaucher Paris Marathon/Providence Half Marathon
Andrew Simon Community member Quinn Niemann-Pick A Providence Half Marathon
Anne Community member Niemann-Pick B Providence Half Marathon
Beth Songer Framingham Kaela and Rhonda Hereditary Angioedema Providence Marathon
Betsy Community member Sienna Fibrodysplasia Ossficans Progressiva (FOP) Providence Half Marathon
Carolyn Ball Framingham Paulette Prader Willi Syndrome (PWS) Providence Marathon
Casey Williams Community member Monique Pompe Providence Marathon
Chris Community member Will Homocystenuria Providence Marathon
Christine Donabedian Community member Tara gne-myopathy (HIBM) Boston
Cian O’Brien Allston Heidi Hereditary Diffuse Leukoencephalopathy with Spheroids (HDLS) Providence Half Marathon
Connor Community member Kimberly Mitochondrial DiseaseLupus Providence Half Marathon
Corey Robinson Genzyme Center Christian Familial Hypocholesterolemia Kentucky Derby Marathon
Dan Ahlstedt Allston Gracie Shwachman – Diamond Providence Half Marathon
Dan Hackett Allston Hayden Mitochondrial Disease Providence Half Marathon
Dan Wilkens Allston Amanda Paroxysmal Nocturnal Hemoglobinuria Providence Half Marathon
Deanna Broderick Allston Brianna Hereditary Spastic Parapalegia (HSP) Providence Half Marathon
Emily Anderson Community member Kristen Gaucher Disease Providence Half Marathon
Emma Community member Gaucher Disease Paris Marathon
Erik Smith Community member Gina Langerhans Cell Histiocytosis (LCH) Providence Half Marathon
Erin Magarian Framingham Kimberly Mitochondrial DiseaseLupus Providence Half Marathon
Frances Crofts Bridgewater, NJ TBA TBA Providence Marathon
George Community member   Stiff Persons Syndrome (SPS) Providence Marathon
Heather Community member Kimberly Mitochondrial DiseaseLupus Providence Half Marathon
Heidi Community member Hereditary Diffuse Leukoencephalopathy with Spheroids (HDLS) Providence Half Marathon
Holly Community member Hereditary Diffuse Leukoencephalopathy with Spheroids (HDLS) Providence Half Marathon
Jack Prior Framingham Brianna Hereditary Spastic Parapalegia (HSP) Providence Half Marathon
Jared Marshall Allston Sienna Fibrodysplasia Ossficans Progressiva (FOP) Boston
Jason Dunklee Framingham Meghan Laryngeal CleftJuvenile Arthritis Providence Marathon
Jay Antonetti Allston Will Homocystenuria Providence Half Marathon
Jeff Hackney Community member Jana Chronic Intestinal Pseudo Obstruction/Motility Disorder Providence Half Marathon
Jenn Azar Community member Rebekah Gaucher Disease Providence Half Marathon
Jessi Colund Community member Sarah Fibromuscular Dysplasia Boston
Jessica Hackett Community member Hayden Mitochondrial Disease Providence Half Marathon
Jim Lowerre Community member Monique Pompe Providence Half Marathon
Jon Rayla Allston Noah Atypical Abetalipoproteinemia Providence Half Marathon
Justin Altman Community member Gail Hypoparathyroidism Providence Half Marathon
Justin Deveau Framingham Patrick Cyclic Vomiting Syndrome (CVS) Boston
Justin Community member Garrett Niemann-Pick A/B Providence Marathon
Kailene Simon Framingham Quinn Niemann-Pick A Providence Half Marathon
Kelsey Hoontis Allston Eli Rothmund Thomson Syndrome (RTS) Providence Marathon
Kevin Belmonte Community member Tanner Mitochondrial Disease Providence Half Marathon
Kimihiko Community member Anne Marie Niemann-Pick B Providence Half Marathon
Kristen Legendre Framingham Rebecca  (Lesley) MastocytosisErythemae Multifromae Providence Half Marathon
Kristin Community member Terri Tyrosinemia Providence Marathon
Kurt Swanson Cambridge AJ  (Kristi) Fibrodysplasia Ossficans Progressiva (FOP) Providence Half Marathon
Kyle Kellinghaus Community member Sarah Congenital Central Hypoventilation Syndrome (CCHS) Providence Half Marathon
Laurent Canneva Genzyme Center Morgan Mastocytosis Boston
Lindsay Dudgeon Community member Tanner Mitochondrial Disease Providence Half Marathon
Lindsay Sweet Field/Boston Foster Family (Laurie) Undiagnosed Boston
Ling Zhou Community member Kristen Gaucher Disease Providence Half Marathon
Lisa Prior Community member Sarah Congenital Hyperinsulinism (CHI) Providence Half Marathon
Lisa Valaika Field – california Lindy Metachromatic Leukodystrophy (MLD) Boston
Lora Moore Allston Heather Langerhans Cell Histiocytosis (LCH) Providence Half Marathon
Louis Rivoirard Framingham Grace (IMO) Hypothalamic Harmatomas (HH) Providence Marathon
Marissa Poole Genzyme center Ben (Julie) Bilateral Congenital CataractsMicrothalmia Providence Half Marathon or Full
Mark Genest Community member Katie Frontotemporal Dementias  Providence Marathon
Martha Stapels Framingham John Multiple Sclerosis (MS) Boston
Mary Beth Blanchard Framingham Natali Jackson-Weiss Syndrome Providence Half Marathon
Mason Community member Hereditary Diffuse Leukoencephalopathy with Spheroids (HDLS) Providence Half Marathon
Matthew Maderia Community member Wylder (IMO) Niemann-Pick A Providence Half Marathon
Maureen McLaughlin Allston Kristen Undiagnosed Boston
Melissa Andrew Community member Erica Mucopolysaccharidoses Type 1 (MPS 1) Providence Half Marathon
Melissa Halstead Framingham Chris Congenital Hyperinsulinism (CHI) Boston
Melissa Community member Anne Marie Niemann-Pick B Providence Half Marathon
Michael Dobedian Field – Oregon Tara gne-myopathy (HIBM) Boston
Molly Ferkins Community member Erica Mucopolysaccharidoses Type 1 (MPS 1) Providence Half Marathon
Nick Thurlow Community member Tara Mast Cell Disease Providence Marathon
Pamela Lynch Field – California Bertran N-glycanase (NGLY1) deficiency Boston
Pat O’Sullivan Allston Keith Williams syndrome Providence Marathon
Pete Smith Community member Holly & Mason Hereditary Diffuse Leukoencephalopathy with Spheroids (HDLS) Providence Half Marathon or Full
Peter Hoontis Community member Eli Rothmund Thomson Syndrome (RTS) Providence Half Marathon
Phillip Maderia Allston  Garrett  Niemann-Pick A/B Providence Marathon
Praveen Bahadduri Waltham Andrew Cyclic Vomiting Syndrome (CVS)Autism Boston
Rachel Sibley Genzyme Center Christie Klippel-Feil Syndrome (KFS)_ Providence Marathon
Rena Baek Framingham Candace Scleroderma Boston
Rick Cavalli Community member Tiffany Pompe Providence Half Marathon
Samantha Szatek Community member Gina Langerhans Cell Histiocytosis (LCH) Providence Half Marathon
Sara Cole Genzyme center Chris Miyoshi Myopathy Providence Marathon
Sara Larrabee Community member Rebekah Gaucher Disease Providence Marathon
Sarah Community member Congenital Hyperinsulinism (CHI) Providence Half Marathon
Sarah Strattman Genzyme Center Madi Mucolipidoses II/III (ML Type II/II) Providence Half Marathon
Sean Hernandez Community member Tiffany Pompe Providence Half Marathon
Shane Community member Georgina Paroxysmal Nocturnal HemoglobinuriaMyelodysplastic syndromes (MDS) Providence Marathon
Sharon Cotnam Allston Victoria Rothmund Thomson Syndrome (RTS) Providence Half Marathon
Shawn Community member Erica & Tony (Wendy) Mastocytosis 9p-deletionMitochondrial Disease Providence Marathon
Shay Zukowski Genzyme Center Gaby Autoimmune polyendocrine syndrome type 1 (APS-1) Boston
Stephanie Dubay Allston Shannon Cushing Syndrome Boston, but Providence 2nd
Steven Souza Community member Liz Mitochondrial Disease Providence Half Marathon or Full
Tom Snead Community member Gail Hypoparathyroidism Providence Half Marathon
Trish Flanagan Community member Jana Chronic Intestinal Pseudo Obstruction/Motility Disorder Providence Marathon
Van Tran Allston Steven Griselli Syndrome Type 1 Boston
Varavani Dwarki Genzyme center Maria Cadasil Boston
Venkat Ryakala Framingham Frank Arterial Tortuosity Syndrome (ATS) Providence Marathon
Zeb Jones Framingham Nancy Neuronal Ceroid Lipofuscinosis (NCL) or Batten Disease – infantile Boston

 

 

 

 

 

 

One comment on “2015 Runners and RARE Community Partners”
  1. Lori Cogan says:
    April 20, 2015 at 4:56 pm

    Hello. I would like to be a runner/patient for your program. I am a runner and also have a rare disease. My disease is sarcoidosis an immune disorder that can be a little evil and look like MS, even cancer. I was diagnosed in 1997 and have had ups and downs and would really love to find a cure!
    May I run for you possibly next year?
    Thank you.
    Lori

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