2017 RARE Champion Of Hope Nominees

Congratulations to our 2017 RARE Champion of Hope Nominees!

Hundreds of individuals and organizations worldwide were nominated by their peers for the 2017 RARE Champion of Hope awards to honor their notable efforts in rare disease advocacy, science, collaborative sciences, and medical care and treatment. Please see the full list of nominees and a map demonstrating the various locations of those nominated below. 

Honorees will be announced July 15, 2017.

Annie Achee, National Leiomyosarcoma Foundation ( NLMSF) – RARE Champion in Advocacy
Oyindamola Adeniyi, Muscular Dystrophy – RARE Champion in Advocacy
Kristin Anthony, PTEN Hamartoma Tumor Syndrome Foundation – RARE Champion in Advocacy
Donna Appell, HPS Network – RARE Champion in Advocacy
Kristin Archibald, NKH Crusaders – RARE Champion in Advocacy
Elisabet Ars, Inherited kidney disorders – RARE Champion in Science
Annette Bakker, Children’s Tumor Foundation – RARE Champion in Science
Alan Beggs, Harvard – RARE Champion in Science
Elizabeth Berry-Kravis, Nieman Pick Type C – RARE Champion in Advocacy
Clint Black, Rett Syndrome – RARE Champion in Advocacy
Harold Bond, Rare Chromosome Disorder – RARE Champion in Advocacy
Ashley Bricker, Maple Syrup Urine Disease and Cystic Fibrosis – RARE Champion in Medical Care & Treatment
Kayliana Bride, Behcet’s Disease, Fibromyalgia – RARE Champion in Advocacy
Jerry Cahill, Champions Action Network & Boomer Esiason Foundation – RARE Champion in Advocacy
Donnette Carroll, Sickle Cell Thalassemia Patients Network – RARE Champion in Advocacy
Ivan Chan, All Cells – RARE Champion in Science and Technology
Dr. Martin Childers DVM, Myotubular Myopathy Gene Therapy Research – RARE Champion in Science
Jennifer Collins, Southeast Galactosemia Association – RARE Champion in Advocacy
Sheryl Crosier, Trisomy 18, Trisomy 13 – RARE Champion in Advocacy
Rachel Daniels-Pettis, Lipodystrophy – RARE Champion in Advocacy
Ilana Danko, Chronically Smiling – RARE Champion in Advocacy
Marlo Dean, Batten Disease- Hope for Dante – RARE Champion in Advocacy
Clarissa DesJardins, Clementia Pharma – RARE Champion in Science and Technology
Eli Diamond, Erdheim-Chester Disease – RARE Champion in Medical Care & Treatment
Laura Edwards, Taylor’s Tale – RARE Champion in Advocacy
Orna Elroy-Stein, George S. Wise Faculty of Life Sciences – RARE Champion in Science
Nia Ervin, Lipodystrophy – RARE Champion in Advocacy
Michele Erwin, All Wheels Up – RARE Champion in Advocacy
Juvianee Estrada-Veras, Erdheim-Chester Disease – RARE Champion in Science
Jennifer Farmer, Friedreich’s Ataxia Research Alliance – RARE Champion in Advocacy
Carion Fenn, Carion Fenn Foundation – RARE Champion in Advocacy
Aliana Fichera, CVID CRPS – RARE Champion in Advocacy
Stephanie Fischer, Everylife Foundation – RARE Champion in Advocacy
Amanda Foisy, Paroxysmal Nocturnal Hemoglobinuria – RARE Champion in Advocacy
Susan Foley, Hashimoto’s Encephalopathy – RARE Champion in Advocacy
Lauren Foster, FD Warriors Inc. – RARE Champion in Advocacy
Jenny Frazier, Shire – RARE Champion in Advocacy
Alena Galan, Maroteaux-Lamy syndrome – RARE Champion in Advocacy
Ava Garnett, Nail Patella syndrome – RARE Champion in Advocacy
Chandu George, Seek a Miracle Ataxia Group – RARE Champion in Advocacy
Jayne Gershkowitz, Amicus Therapeutics – RARE Champion in Advocacy
M. Eric Gershwin, Primary Biliary Cholangitis – RARE Champion in Science
Michael Goldberg, Hugs For Mito, Inc. – RARE Champion in Advocacy
Dorothy Grange, Cantu Syndrome Interest Group – RARE Champion in Medical Care & Treatment
Siri Atma Greeley, The University of Chicago – RARE Champion in Medical Care & Treatment
Paul Grossfeld, UCSD Rady Children’s Hospital – RARE Champion in Science
Sudhir Gupta, Primary immunodeficiency – RARE Champion in Medical Care & Treatment
Taylor Gurganus, Bohring-Opitz Syndrome Foundation – RARE Champion in Advocacy
Caleigh Haber, Fight2Breathe – RARE Champion in Advocacy
Linda Hageman, AMENSupport – RARE Champion in Advocacy
Randi Hagerman, University of California at Davis Medical Center – RARE Champion in Science
Gary Hammock, Aicardi Goutieres Syndrome – RARE Champion in Advocacy
Janalee Heinemann, Prader-Willi Syndrome Association (USA) – RARE Champion in Medical Care & Treatment
Kenneth Hobby, Cure SMA – RARE Champion in Advocacy
Mary Hoffman, Coffin Lowry Syndrome Foundation – RARE Champion in Advocacy
Melissa Hogan, Saving Case and Friends/Project Alive – RARE Champion in Advocacy
MaryBeth Hollinger RN MSN, MitoAction – RARE Champion in Advocacy
Julie Hoover-Fong, Schinzel-Giedion Syndrome, Skeletal Dysplasias – RARE Champion in Medical Care & Treatment
Robert Hopkin, Fabry disease and other lysosomal storage diseases – RARE Champion in Medical Care & Treatment
Penny Howard, Hope4Harper – RARE Champion in Advocacy
Michael Hrehor, Mollaret’s Meningitis, FND – RARE Champion in Advocacy
Daniel Huber, Coriell Institute for Medical Research – RARE Champion in Science and Technology
Susan Q. Knittle, Hunter Periodic Paralysis – RARE Champion in Advocacy
Kim Illions, Pediatric Hydrocephalus Foundation – RARE Champion in Advocacy
Immune Deficiency Foundation – RARE Champion in Medical Care & Treatment
Barby Ingle, International Pain Foundation (iPain) – RARE Champion in Advocacy
Ethylin Jabs, Moebius Research at the National Institutes of Health – RARE Champion in Science
Laurie & Mike Jaffe, Neonatal diabetes – RARE Champion in Advocacy
Catherine Jayasuriya, Coalition Duchene – RARE Champion in Science and Technology
Jack Johnson, Fabry Support and Information Group (FSIG) – RARE Champion in Advocacy
James Johnston, Sanford Hospital and Clinics, Tatton-Brown-Rahman Syndrome – RARE Champion in Medical Care & Treatment
Judy Jones, Cutaneous Lymphoma – RARE Champion in Advocacy
Sherri Jones, Tarlov Cyst Society Of Canada – RARE Champion in Advocacy
Taylor Kane, Run for ALD – RARE Champion in Advocacy
Nisa Katz, POTS/Dysautonomia, Ehlers Danlos Syndrome, Trigeminal Neuralgia, Chiari – RARE Champion in Advocacy
Lisa Klimas, Mast Attack – RARE Champion in Advocacy
Antonie Kline, Cornelia de Lange Syndrome Foundation – RARE Champion in Medical Care & Treatment
Jennifer Knapp, Adrenal Insufficiency – RARE Champion in Advocacy
Kenneth Kraemer, National Institutes of Health – RARE Champion in Science
Ian Krantz, PKS kids – RARE Champion in Science
Bethany LaPrad, Phenylketonuria – RARE Champion in Advocacy
Anne Lawlor, 22q11 Ireland – RARE Champion in Advocacy
Nancy Lazarus, Achalasia Awareness Organization – RARE Champion in Advocacy
Riley Lee, Microcephaly, Turner syndrome, Cysytic Hygroma and Hydrops, PFAPA, and Carsinomasarcoma – RARE Champion in Advocacy
Deb Lee Gould, FOD Support – RARE Champion in Advocacy
Stephen Lin, California Institute for Regenerative Medicine (CIRM) – RARE Champion in Science and Technology
Grace Loeb, Guardian Hands Foundation – RARE Champion in Advocacy
Kari Luther Rosbeck, Tuberous Sclerosis Alliance – RARE Champion in Advocacy
Cindy Luxhoj, Alagille Syndrome Alliance – RARE Champion in Advocacy
Patrick James, Lynch Hemophilia – RARE Champion in Advocacy
Pam Mace, Fibromuscular Dysplasia Society of America – RARE Champion in Advocacy
Autumn McCuan, Chiari Awareness – RARE Champion in Advocacy
Debra Melikian, GIST – RARE Champion in Advocacy
Victor Mendevil, Myasthenia Gravis Foundation of America – RARE Champion in Advocacy
Courtnay Midkiff, Fabry Disease – RARE Champion in Advocacy
Debra Miller, CureDuchenne – RARE Champion in Advocacy
Linie Moore, PBCers Organization – RARE Champion in Advocacy
Leslie Morrison, University of NM Hospital – RARE Champion in Science
Natalie Murphy, EDS Awareness Ireland – RARE Champion in Advocacy
Vinodh Narayanan, TGen – RARE Champion in Medical Care & Treatment
Derek Neilson, Cincinnati Childrens – RARE Champion in Medical Care & Treatment
Kathy Nicholls, Royal Melbourne Hospital – RARE Champion in Medical Care & Treatment
Neena Nizar, The Jansen’s Foundation – RARE Champion in Advocacy
Kirsten Norgaard, Adrenal Insufficiency – RARE Champion in Advocacy
Thomas Novak, Cellular Dynamics International – RARE Champion in Science and Technology
Anamaria Nyeki, Asociatia Cetatea Voluntarilor Arad – RARE Champion in Advocacy
Jennifer O’Connor, Rare Action Network/NORD – RARE Champion in Advocacy
Meghan Ortega, PTEN Hamartoma Tumor Syndrome Foundation – RARE Champion in Advocacy
Romina Ortiz, Rare Genomics Institute – RARE Champion in Advocacy
Carrie Ostrea, Little Miss Hannah Foundation – RARE Champion in Advocacy
Jennifer Page, Congenital Heart Defects – RARE Champion in Advocacy
Mary Elizabeth Parker, U.R. Our Hope – RARE Champion in Advocacy
Millan Patel, BC Children’s Hospital – RARE Champion in Medical Care & Treatment
Renee Petro, Global fires network – RARE Champion in Advocacy
Rachel Petties, Congenital Lypodystrophy – RARE Champion in Advocacy
Tessa Prebble, CHARGE Syndrome, NZORD – RARE Champion in Advocacy
Dr. Alexey Pshezhetsky, University of Montreal – RARE Champion in Science
Maria Puiu, Prader Willi – RARE Champion in Medical Care & Treatment
Julie Raskin, Congenital Hyperinsulinism International (CHI) – RARE Champion in Advocacy
Jennifer Restemayer, Mucopolysaccharidoses – RARE Champion in Advocacy
Marc Riedl, US Hereditary Angiodema Asociation – RARE Champion in Medical Care & Treatment
Amanda Ripsam, 22Q11.2 – RARE Champion in Advocacy
Frank Rivera, All Rare Disease and Sarcoidosis – RARE Champion in Advocacy
Losia Rojas, DENT neurology – RARE Champion in Medical Care & Treatment
Lynn Sanders, EDS Network C.A.R.E.S. Foundation – RARE Champion in Advocacy
Allena Savage, POMPE – RARE Champion in Advocacy
Rita Scharff, 15.3q Deletion – RARE Champion in Advocacy
Pari Schroeder, MCAS, Mastocytosis, EOE, pots , EDS – RARE Champion in Advocacy
Avery Schuckmann, OTC – RARE Champion in Medical Care & Treatment
Leah Schust, FamilieSCN2A Foundation – RARE Champion in Advocacy
Sandra Sermone, ADNP Kids Research Foundation – RARE Champion in Advocacy
Darlene Shelton, Danny’s Dose Alliance – RARE Champion in Advocacy
Janice Sherwood, Fight ALD – RARE Champion in Advocacy
Prasanna Kumar Shirol, Organization for rare diseases India – RARE Champion in Advocacy
Jason Sicklick, UCSD Moores Cancer Center – RARE Champion in Medical Care & Treatment
Elizabeth Sides, Deletion 4q 25-28.2 – RARE Champion in Advocacy
Matthew Skelton Ph.D., Division of Neurology, Cincinnati Children’s Hospital – RARE Champion in Science
Heather Smith, SCID – Angels for Life – RARE Champion in Advocacy
Tiera Smith, Balos Disease or Balos Concentric Sclerosis – RARE Champion in Advocacy
Stephanie Snow-Gebel, The Snow Foundation – RARE Champion in Advocacy
Sera Snyder, Desmoid Tumors Research Foundation – RARE Champion in Advocacy
Gary Steinberg, Stanford Neuroscience – RARE Champion in Medical Care & Treatment
Skye Steppe, FD Warriors, Fibrous Dysplasia Foundation – RARE Champion in Advocacy
Colin Steward, Bristol Royal Hospital for Children – RARE Champion in Medical Care & Treatment
Shannon Strader, Live Bella Soul – RARE Champion in Advocacy
Andra Stratton, Lipodystrophy United – RARE Champion in Advocacy
Whitney Strauss, Association For Creatine Deficiencies – RARE Champion in Advocacy
Margarita Sweeney-Baird, Inclusive Skating – RARE Champion in Advocacy
Debbie Taillefer, Soft Bones Canada – RARE Champion in Advocacy
Andrea Taylor, A Twist of Fate-ATS – RARE Champion in Advocacy
James Valentine, Spinal Muscular Atrophy (SMA) – RARE Champion in Advocacy
Elja Van de Veer, International Mito Patients – RARE Champion in Advocacy
Kristen Vanags, Georgia PKU Connect – RARE Champion in Advocacy
Mary Vanderlaan, CCHS Family Network – RARE Champion in Advocacy
Christina Waters, Rare Science – RARE Champion in Advocacy
Avery Watts, Homozygous familial hypercholesterolemia – RARE Champion in Advocacy
Lale’ Welsh, Neuromuscular Disease Foundation – RARE Champion in Advocacy
Patricia Weltin, Rare Disease United Foundation – RARE Champion in Advocacy
Claire Wineland, Claire’s Place Foundation – RARE Champion in Advocacy
Barbara Wuebbels, Audentes Therapeutics – RARE Champion in Advocacy
Dr. George Yancopoulos, Regeneron Pharmaceuticals, Inc. – RARE Champion of Science
Tracy Zervakis, The Society for Participatory Medicine – RARE Champion in Advocacy