Norm Winnerman, retired Danbury High School teacher and Athletic Director, and valued member of the Cornelia de Lange Syndrome (CdLS) Foundation will be receiving the Rare Impact Award. The National Organization for Rare Disorders (NORD) will be honoring all exceptional awardees on May 15th at the Rock and Roll Hall of Fame in Cleveland, Ohio. The award honors his years of service as a pioneer, mentor and advocate.

Norm has been a part of the CdLS Foundation since 1989, when his granddaughter, Alison, was born with CdLS, a rare genetic syndrome. She died suddenly at the age of four and a half, the result of a medical complication associated with the syndrome. When asked why he remains part of the Foundation, Norm responded, “The people who have impacted those living with this rare disease most are the staff, board and Clinical Advisory Board at the CdLS Foundation. My main role as a volunteer has been doing work behind the scenes to lighten the load and help the professional staff members do their jobs – serving families. Nothing else in my life would have given me the opportunity and motivation to do this and meet as many different people as working with the CdLS Foundation. At the end of this journey, it couldn’t have worked without the support of my wife, daughters and their families.”

Norm has been a constant fixture in the inner workings of the Foundation and a beacon of hope for all who have met him. His warm smile, his engaging attitude and positive presence are all factors that led the CdLS Foundation to nominate him for this honor. “Norm is unabashedly himself! He brims with wit, charm and incredible tenacity,” Bonnie Royster, Executive Director, stated about Norm being an inspiration. “At 86 years young, I’m continually inspired by his willingness to learn and his unparalleled support of those living with CdLS.”

In 2008, Norm was awarded the Sue Anthony Award, the Foundation’s highest award – named after our founder and originator of Reaching Out (the Foundation’s family publication) – which represents innovation, commitment, integrity and enduring contribution to families of individuals living with CdLS. He was also inducted into the de Lange Society for the many decades the he has contributed creative vision, innovative ideas and vital assistance to improve the quality of services and programs available to people with CdLS and their families.

Deirdre Summa, Family Service Manager, believes, “His dedication, compassion, loyalty and generosity are just a few ways to describe Norm’s presence within the Foundation. I so admire his passion to educate others about CdLS and his unwavering support to individuals with CdLS and their families.”

For more information about Norm’s award, visit:

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