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January 9, 2013

On Wednesday, December 19th, the Canadian PNH community lost a strong advocate and great friend. It is with great sadness that we mourn the loss of Norma Metz of North Bay, who passed away after being diagnosed with congestive heart failure in November. She was 73.

Norma not only played a significant role in her own community in North Bay, but she also supported the broader PNH patient community, as she selflessly advocated on behalf of our patients.

Norma was a mainstay in our group, and fearlessly led our campaign for access to Soliris. She was a catalyst in ensuring that life-saving treatment was made available and accessible to all PNH patients.

She often reflected upon PNH patients who had died as a result of their condition, and hoped that her efforts in Canada would encourage other countries to fund Soliris to give patients a longer, more active life.

Our entire community is grateful to Norma and her spirit and passion. She was a truly positive inspiration and will be missed. Our thoughts are with Norma’s family at this difficult time.

Donations in memory of Norma can be made to the North Bay Regional Health Centre Foundation.