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2015 Portraits of Courage

On the evening of Tuesday May 19, 2015 the rare disease community gathered at the National Building Museum in Washington D.C. Industry leaders, physicians, patients, families and friends were surrounded by butterflies and the spring time colors of pastel blues and greens to symbolize the individuality of each of the honorees that evening. The theme spoke to the power and potential for one person to make a positive impact on the lives of others.

Weren’t able to attend Portraits of Courage in 2015? Watch the full event here!

Or just portions of it here! 

2015 Portraits of Courage Honorees

Portraits of Courage gives NORD the opportunity to honor the patients, caregivers, industry leaders, and those making an impact for the rare disease community.

In 2015, ten patients and caregivers were chosen to be Portraits of Courage Honorees. Each one had a powerful story to tell about their fight with a rare disease whether it was a fight for themselves or for their children. NORD worked with a local university, Western Connecticut State University, to have each honoree’s portrait done. A video was also made to tell each of their stories. Please enjoy  their portraits below!

 

Devin Alvarez

Portrait done by Michelle Achorn

Portrait done by Michelle Achorn

Sprengel Deformity

Read Devin’s full story here.

 

Emily Argersinger

Portrait done by Kathryn Michaud

Portrait done by Kathryn Michaud

Sturge-Weber Syndrome

Read Emily’s full story here. 

Laura Crandall

Portrait done by Erika Erbs-McCabe

Portrait done by Erika Erbs-McCabe

Sudden Unexplained Death in Childhood (SUDC)

Read Laura’s full story here. 

Anthony Ferrandino

Portrait done by Paige Grant

Portrait done by Paige Grant

Batten Disease

Read Tony’s full story here. 

Bailey Gribben

Portrait done by Paige Grant

Portrait done by Paige Grant

Neurofibromatosis Type 2

Read Bailey’s full story here. 

Sophia Hanson

Portrait done by Carolina Trinidad

Portrait done by Carolina Trinidad

Lymphedema

Read Sophia’s full story here.

Savannah Hollis

Portrait done by Erika Erbs-McCabe

Portrait done by Erika Erbs-McCabell

Cavernous Angioma

Read Savannah’s full story here.

Glenn and Cara O'Neill

Portrait done by Joel Earley

Portrait done by Joel Earley

Sanfillipo Syndrome

Read Glenn and  Cara’s full story here. 

Yusuf Patel

Portrait done by Jesse Navarra

Portrait done by Jesse Navarra

Methylmalonic Acidemia (MMA))

Read Yusuf’s full story here. 

Lori Sames

Portrait done by Lori Sames

Portrait done by Lori Sames

Giant Axonal Neuropathy

Read her full story here. 

Awards presented in 2015

NORD awarded six industry leaders with Industry Innovation Awards in 2015 for bringing orphan products to market in the preceding year. Other awards given out included: Public Health Leadership Awards, given to two politicians each year who are friends to the rare disease community; the Special Recognition Award; the Abbey S. Meyers Award, given each year to one NORD member organization who is providing excellent service to its individual members, the first ever Rare Disease Public Awareness Award, given to an incredible person who devotes themselves to raising awareness for rare diseases; and the Lifetime Achievement Award.

2015 Honorees

Public Health Leadership Awards

The Honorable Lamar Alexander

The Honorable Robert Casey, Jr.

 

 

Special Recognition Award

Margaret A. Hamburg, M.D.

Former Commissioner, Food and Drug Administration

 

 

Abbey S. Meyers Leadership Award 

International Pemphigus & Pemphigoid Foundation

 

 

Rare Disease Public Awareness Award 

Cindy Abbott

 

 

Lifetime Achievement Award

Francis S. Collins, M.D., Ph.D.

Director, National Institutes of Health

2015 Industry Innovation Awards

Vimizim for Morquio A. Syndrome

Ofev for Idiopathic Pulmonary Fibrosis

Cerdelga for Gaucher Disease Type 1

Northera for Neurogenic Orthostatic Hypotension

Zykadia for Anaplastic Lymphoma Kinase-Positive Metastatic Non-Small Cell Lung Cancer

Hetlioz for Non-2-Hour Sleep-Wake Disorder