2015 RARE Champion Of Hope Honorees


Global Genes™  would like to congratulate the following 2015  RARE Champion of Hope Honorees.   These individuals and organizations have been recognized by their peers because of their extraordinary efforts in Advocacy, Science, Awareness, Medical Care and Treatment, Industry, Documentary, and Brave Feats of Courage.

Learn more about this year’s Honorees, here


RARE Champion of Hope – Advocacy

Alison Rockett Frase – Founder and Vice President, The Joshua Frase Foundation


RARE Champion of Hope – Awareness

 Lisa Genova Author, Inside the O’Briens and Still Alice


RARE Champion of Hope – Awareness

Andrew Lenchewski – Creator, Executive Producer, Royal Pains
• Mark Feuerstein – Actor, Royal Pains
• Michael Rauch – Executive Producer, Royal Pains


RARE Champion of Hope – Brave Feats of Courage

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


RARE Champion of Hope – Collaborations in Advocacy

Bill and Victoria Strong – Parent Advocates, SMA, and Founders, The Gwendolyn Strong Foundation (theGSF.org)


RARE Champion of Hope – Collaborations in Science

Ben Lenail – Strategy Officer, ALD Connect and Patient Advocate
• Florian Eichler, MD – Board Member, ALD Connect and 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

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


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 – International Teen Advocacy

Madi Vanstone – Patient Advocate, Cystic Fibrosis 


RARE Champion of Hope – Medical Care and Treatment

Maria Escolar, MD, MS – Director, Study of  Neurodevelopment in Rare Disorders Program, Associate Professor, Pediatrics, University of Pittsburgh School of Medicine


RARE Champion of Hope –  Science

David Fajgenbaum – Co-Founder, Executive Director, The Castleman Disease Collaborative Network


RARE Champion of Hope – Teen Advocacy

Shira Strongin – Patient Advocate, Ehlers-Danlos Syndrome and Founder, The Sick Chick Network


Honoree Website/Email Badge

As an honoree, 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.