2015 RARE Champion Of Hope Nominees

nominees-graphic

Global Genes™  would like to congratulate the following 2015  RARE Champion of Hope Nominees.   These individuals and organizations have been recognized by their peers because of their extraordinary efforts in Advocacy, Science, Medical Care and Treatment, and Collaborations in Science.

All of the 2015 nominees will receive a special recognition gift as well as an invitation to join us at this year’s Tribute event as our special guests.

 

RARE Champion of Hope – Advocacy

• Donna Appell – Hermansky – Pudlak Syndrome Network
• Kristin Archibald – NKH Crusaders
• Jamie Barlow
• Jim Bornac
• Katie Brandt
• Dr. Deborah Bruns – Southern Illinois University Educational Psychology and Special Education
• Kristine Caalim
• Tom Christie – Relapsing Polychondritis Awareness and Support Foundation
• Barbara Cole – Batten Disease Family Assoication – UK
• Brenda Conger – CFC International
• Prof. Hugh Dawkins – Government of Western Australia, Department of Health
• Daniel Defabio
• Sarah DiDavide – Narcolepsy Network
• Yolaine Dupont – PVNH Support and Awareness
• Karen Durrant – Autoinflammatory Alliance
• Tonia Sina Ellis
• Thomas Exler – Association for the Bladder Exstrophy Community
• Carly Findlay
• Lauren Foster
• Dr. Paul Grossfeld – University of California, San Diego
• David Hamlin – United Pompe Foundation
• Jamie Holmes – Jamie’s Dream Team
• Kerry Hughes – Harmony 4 Hope
• Barby Ingle – Power of Pain Foundation
• Christian Jacobs
• Drew Karakourtis
• Sharon King – Taylor’s Tale
• Jennifer Knapp – Adrenal Insufficiency United
• Bob Knutzen – Pituitary Network Association
• Sierra Kulas – Kure for Kulas
• Riley Lee
• Carri Levy – The Balancing Act, LLC
• Grace Loeb – Guardian Hands Foundation
• Dr. Amy Lossie – Beautiful You MRKH Foundation
• Isabelle Lousada – Amyloidosis Foundation, Inc.
• Pamela Mace – Fibromuscular Dysplasia Society of America (FMDSA)
• Phil Maderia – Sanofi – Genzyme
• Mr. and Mrs. Might – NGLY1 Foundation
• Michele Milota – XP (Xeroderma Pigmentosum) Family Support Group
• Allison Moore – Hereditary Neuropathy Foundation, Inc.
• Martin Mueller – Martin Mueller IV Achalasia Awareness Foundation, Inc.
• Sharon Nissley – Klippel-Feil Syndrome Freedom
• Kirsten Norgaard – Adrenal Insufficiency United
• Mary O’Connor – Cushing’s Help Community
• Mr. and Mrs. O’Neill – Cure Sanfilippo Foundation
• Alison Rockett Frase – Founder, Vice President, The Joshua Frase Foundation
• Deborah Oliver – Deborah Oliver
• Irfan Patel
• Joel David Pena Castillo – Federacion Colombiana de Enfermedades Raras (FEMEXER)
• Richard Pezzillo – Hemophilia Federation of America (HFA)
• Julie Raskin – Congenital Hyperinsulinism International
• Priscilla Rosenlund – Priscilla Rosenlund
• Ken Rupert
• Lynn Sanders – Ehlers-Danlos Network CARES Foundation
• James Sanders – Hypoparathyroidism Association, Inc.
• Frank Sasinowski
• Bonnie Schneider – IgA Nephropathy Foundation of America
• Elisa Seeger – The Aidan Jack Seeger Foundation
• Kelly Seifried – Fibromuscular Dysplasia Society of America (FMDSA)
• Prasanna Shirol – Lysosomal Storage Disorders Support Society (LSDSS), India
• Dr. Nicolas Sireau – Findacure: the Fundamental Diseases Partnership
• Daisy Steiner – CHILD Foundation (Children’s Interstitial Lung Disease Foundation)
• Kayte Thomas
• Tracy VanHoutan – Noah’s Hope
• Monica Weldon – Bridge the Gap – SYNGAP Education & Research Foundation
• Patricia Weltin – Rare Disease United Foundation
• Sam Zavitz

 

RARE Champion of Hope – Awareness

• Andrew Lenchewski – Executive Producer, Royal Pains
• Michael Rauch – Executive Producer, Writer, Director, Royal Pains
• Mark Feuerstein – Actor, Royal Pains
• Lisa Genova – Author, Inside the O’Briens and Still Alice

 

RARE Champion of Hope – Brave Feats of Courage

• Noah Coughlan – 3X Transcontinental Runner, Rare Disease Advocate, Run for Rare
Jonathan Maidment – Appalachian Trail Hiker and Patient Advocate, Alpha-1
• Courtnay Midkiff – Transcontinental Walker, Patient Advocate, Fabry
• Bonnor Paddock – Kona Ironman Competitor, Marathoner, Extreme Climber, Author, and Patient Advocate, Cerebral Palsy

 

RARE Champion of Hope – Collaborations in Advocacy

• Dr. Jelena Aleksic – Cambridge Rare Disease Network
• Jennifer Bernstein – Horizon Government Affairs
• Karen Durrant – Autoinflammatory Alliance
• Lynn Egan – Alternating Hemiplegia of Childhood Foundation
• Monica Grund – RASopathies Network USA
• Dr. Tim Guilliams – Cambridge Rare Disease Network
• Gil Hardy – Parenteral Nutrition Down Under (PNDU)
• Greg Harper
• Keegan Johnson – Foundation for Prader-Willi Research
• Paul Merrigan – Aegerion Pharmaceuticals
• Martin Mueller – Martin Mueller IV Achalasia Awareness Foundation, Inc.
• Nicola Nelson – The Hashimoto’s Encephalopathy SREAT Alliance
• Beth Nguyen – Worldwide Syringomyelia & Chiari Task Force Inc.
• Flora Raffai – Findacure: the Fundamental Diseases Partnership
• Lisa Schill – RASopathies Network USA
• Lisa Schoyer – RASopathies Network USA
• Dr. Nicolas Sireau – Findacure: the Fundamental Diseases Partnership
• John Stamler – Ben’s Friends
• Dr. Kathryn Swoboda – Alternating Hemiplegia of Childhood Foundation
• Dr. Sreedhar Tirunagari – SAMSKARA
• Jennifer Tousseau – Autoinflammatory Alliance
• Katherine Wilemon – FH Foundation
• Karen Winterbourn – Parenteral Nutrition Down Under (PNDU)
• Patricia Wood – NBIA Disorders Association
• Bill & Victoria Strong – Parent Advocates, SMA, The Gwendolyn Strong Foundation (theGSF.org)

 

RARE Champion of Hope – Collaborations in Science 

• Kristin Archibald – NKH Crusaders
• Dr. Lisa Boyette – SAVE JON
• Jonathan Boyette – SAVE JON
• Dr. Jimi Cook – University of Missouri
• Fiona Fraser – The Genome Analysis Centre
• Catherine Jayasuriya – Coalition Duchenne
• Dr. Veronica Kinsler – UCL Advances
• Dr. Sven Krengel – Universitatsklinikum Schleswig-Holstein
• Dr. Eduardo Marban – Cedars-Sinai Heart Institute
• Dr. Ashfaq Marghoob – Memorial Sloan-Kettering Cancer Center, New York
• Dr. Fiona Nielsen – DNAdigest
• Dr. Jim Olsen – Project Violet
• Christian Rubio – SERMO
• Dr. Dietrich Stephan – SAVE JON
• Karin Wells-Kilpatrick – PCDH19 Alliance
• Dr. Feng Zhang – Broad Institute
• Ben Lenail – Strategy Officer, ALD Connect
• Florian Eichler, MD – Board Member, ALD Connect, ALD/AMN Clinician, Scientist, Harvard/Mass General Hospital
• Kathleen O’Sullivan-Fortin – Board Member, ALD Connect, and ALD/AMN Advocate

 

RARE Champion of Hope – Documentary

• Marianna Palka – Writer, Producer and Patient Advocate, The Lion’s Mouth Opens
• Lucy Walker – Director, The Lion’s Mouth Opens

 

RARE Champion of Hope – Global Patient Ambassador

• Ben Lou – Patient Advocate, Spinal Muscular Atrophy (SMA)

 

RARE Champion of Hope – Industry

• Alexey Salamakha  – Manager of Patient Advocacy, Rare Diseases, Novartis Pharmaceuticals Corporation
• Nicole Riley – Director of Public Relations, Oncology Business Unit Novartis Pharmaceuticals Corporation

 

RARE Champion of Hope – Medical Care and Treatment

• Dr. Shumyle Alam – New York-Presbyterian Morgan Stanley Children’s Hospital
• Prof. Colin Catel – University of Colorado, Denver
• Prof. Henri Colt
• Elisa Debillis Seeger
• Elesha Draeger 
• Dr. Frank Feigenbaum – Feigenbaum Neurosurgery P.A.
• Dr. Ozlem Goker-Alpan – O & O Alpan
• Dr. Karen Herbst – University of Arizona Medical Center
• Dr. Dunbar Ivy – Children’s Hospital of Colorado
• Dr. Virgina Kimonis – University of California, Irvine
• Dr. Antonie Kline
• Sierra Kulas – Kure for Kulas
• Dr. Ranganath Lakshminarayan – Royal Liverpool University Hospital
• Dr. Howard Lederman – Johns Hopkins Children’s Center, Baltimore, Maryland
• Dr. Catherine Mazzola – New Jersey Pedicatric Neuroscience Institute
• Dr. Millan Patel – University of British Columbia
• Dr. Anthony Perszyk
• Dr. Dan Radar – University of Pennsylvania
• Dr. Inderpal Randhawa – Food Allergy Center at Miller Children’s Hospital
• Dr. William Reiner
• Prasanna Shirol – Lysosomal Storage Disorders Support Society (LSDSS), India
• Dr. Todd Swick
• Dr. Nicole Tartaglia – Children’s Hospital of Colorado
• Laurie Tsilliandis
• Dr. Kathryn Wagner
• Jennifer Wallace – Duchenne Therapy Network
• Dr. David Weinstein – University of Florida
• Dr. Maria Escolar – Director, Sudy of Neurodevelopment in Rare Disorders Program, Associate Professor, Pediatrics, University of Pittsburgh School of Medicine

 

RARE Champion of Hope – Science

• Dr. Alan Beggs – Boston Children’s Hospital 
• Dr. Aubrey Milunsky – Center for Human Genetics
• Dr. Ben Solomon
• Dr. David Fajgenbaum – Co-Founder, Executive Director, The Castleman Disease Collaborative Network
• Dr. David Sweatt – University of Alabama at Birmingham
• Dr. Deborah Bruns – Southern Illinois University Educational Psychology and Special Education   
• Dr. Diana Driscoll
• Dr. Ethan Perlstein 
• Dr. James Olson – University of Washington
• Dr. Leslie Thompson – University of California, Irvine
• Dr. Mingjia Dai – Icahn School of Medicine at Mount Sinai Hospital
• Dr. Ryszard Kole – Sarepta Therapeutics
• Dr. Stanley Crooke – Isis Pharmaceuticals, Inc.
• Dr. Tony Futerman
• Dr. Tim Cunniff – Marathon Pharmaceuticals, Llc.
• Dr. Vinodh Narayanan – Translational Genomics Research Institute (TGen)
• Prof. Alvaro Villanueva – Virtual Eye Care MD

 

RARE Champion of Hope – Teen and International Teen Advocacy

• Cassandra Barnby 
• Connor Yokley
• Dakota Reilly 
• Derrick Barnby
• Devin Alvarez
• Eileen Garrido
• Kaitlyn McAfee – Color the Curve
• Kendall Gagliano
• Madi Vanstone – Patient Advocate, Cystic Fibrosis
• Manuel Mendoza – XDP: Breaking Social Misconception, One Smiley at a Time
• Meghan Ortega
• Morgan Gleason
• Phillip Yurchenko
• Samantha Pecoraro
• Shira Strongin – Patient Advocate, Ehlers-Danlos Syndrome, Founder, Sick Chick Network


Nominee Website/Email Badge

As a nominee, please feel free to download this badge in recognition of your accomplishments. To Download: Click on the image, then right click and select save image.

tribute-nominee-badge2