By Yvonne Zipp

Congressman Fred Upton will be receiving an award in Washington Thursday from the National Organization for Rare Disorders (NORD).

Mattawan resident Sarah Kennedy and her daughters, Brooke, 5, and Brielle, 6, who were the subject of a Kalamazoo Gazette profile in 2012, will present the award to Upton. The two girls have a rare disease known as Type II spinal muscular atrophy. 

Upton, R-St. Joseph, cited the sisters as an inspiration for his sponsorship of the National Pediatric Research Network Act, which passed in 2013 and enhances pediatric medical research and collaboration among researchers.

"More than half of the people living with rare diseases today are children," said Peter Saltonstall, NORD's President and CEO, in a statement.  "These diseases tend to be very serious, and many don't have treatments and are not being studied by researchers.  Expanding medical research is very important."

The NORD staff invited the Kennedy family to attend the event after reading a news story in which Upton said that meeting the Kennedy children had inspired the legislation.  

It will be presented at the nonprofit organization's annual Portraits of Courage Celebration at the National Building Museum in Washington DC.

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