NORD Hosts "Portraits of Courage" Celebration

                NORD Hosts "Portraits of Courage" Celebration

PR Newswire

WASHINGTON, May 9, 2014

WASHINGTON, May 9, 2014 /PRNewswire-USNewswire/ -- The National Organization
for Rare Disorders (NORD) focused a spotlight on individuals and families who
display great courage as they live with rare diseases at its Portraits of
Courage Celebration last night.

Children with rare disease present award to Representative Fred Upton (MI) at
NORD "Portraits of Courage" Celebration.

During the program, Brooke and Brielle Kennedy of Michigan, ages 5 and 6, who
have a rare disease known as spinal muscular atrophy, put a medal around the
neck of Representative Fred Upton of Michigan for sponsoring legislation to
promote and expand pediatric medical research.

A Portraits of Courage gallery displayed photos and stories of 18 individuals
and families representing the spirit of the rare disease community. These
included Sam and Alex Bode, two sisters from Connecticut living with
Friedreich's ataxia; Joe Ellenberger of Nebraska, living with paroxysmal
nocturnal hemoglobinuria (PNH); and Sam Berns, who died earlier this year and
who helped promote worldwide awareness of progeria.

"This was a celebration of the spirit of the community," said NORD President
and CEO Peter L Saltonstall. "We meet extraordinary people every day in our
work at NORD, and we chose this way of honoring the courage that our patients
and families display in the face of great challenges."

The celebration took place at the National Building Museum in Washington, DC.
The program included remarks by Sean Hepburn Ferrer, son of actress Audrey
Hepburn and Mel Ferrer, who shared the story of how a rare disease affected
his family. Audrey Hepburn died of a rare cancer known as pseudomyxoma
peritonei.

In addition to the Portraits of Courage patients and families, honorees
included:

PUBLIC HEALTH LEADERSHIP AWARDS:

  oSenator Sherrod Brown (OH)
  oRepresentative Fred Upton (MI)

ABBEY MEYERS LEADERSHIP AWARD:

  oMPN Research Foundation

LIFETIME ACHIEVEMENT AWARD:

  oJohn Walsh, co-founder of the Alpha-1 Foundation and AlphaNet Inc.

PARTNERS IN PROGRESS AWARDS FOR ORPHAN PRODUCTS APPROVED IN 2013:

  oActelion Pharmaceuticals for Opsumit
  oBayer HealthCare for Adempas
  oGenentech Inc. for Gazyva
  oGenzyme, a Sanofi Company and Isis Pharmaceuticals for Kynamro
  oGlaxoSmithKline Plc for Tafinlar and Mekinist
  oPharmacyclics Inc. for Imbruvica 

National Organization for Rare Disorders (NORD) logo

Photo - http://photos.prnewswire.com/prnh/20140509/86217
Logo- http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b

SOURCE National Organization for Rare Disorders (NORD)

Website: http://www.rarediseases.org
Contact: Mary Dunkle, 203 482 9934, mdunkle@rarediseases.org
 
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