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Dec. 1, 2014

TOPIC: Featured News, Industry, Patients & Members

NORD Celebration Highlights the Courage of Children and Adults Living with Rare Diseases

Posted by Mary Dunkle
Portraits of Courage


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.

During the program, Brooke and Brielle Kennedy of Michigan, ages 5 and 6, 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:


  • Senator Sherrod Brown (OH)
  • Representative Fred Upton (MI)


  • MPN Research Foundation


  • John Walsh, co-founder of the Alpha-1 Foundation and AlphaNet


  • Actelion Pharmaceuticals for Opsumit
  • Bayer HealthCare for Adempas
  • Genentech Inc. for Gazyva
  • Genzyme, a Sanofi Company and Isis Pharmaceuticals for Kynamro
  • GlaxoSmithKline Plc for Tafinlar and Mekinist
  • Pharmacyclics Inc. for Imbruvica


One Response to “NORD Celebration Highlights the Courage of Children and Adults Living with Rare Diseases”

  1. Susan Krug says:

    Thank you for the Honor and thank you Nord for bring awareness to all of us who have a rare disease. It means a lot to me to know you have our backs in the struggle to bring awareness to Hypophosphatasia and other rare and misdiagnosed disease!

    Thank you for a memorable night of celebrations Lives and Life. Its a star of light in our daily struggles ..

    Special Thanks to Mary and Carrie for getting me there and having a smooth trip.