Walk raises funds and awareness for rare disease

By Douglas McCulloch | Sep 20, 2017
Courtesy of: Diane Fairbanks The group of walkers pose for a photo in Padanaram.

About two dozen people walked the streets of Padanaram on September 9 to support a Dartmouth woman’s quest to raise awareness of the rare disease that claimed the life of her grandson Zeke.

Organized by Diane Fairbanks, the charity walk raised funds for the Children’s Hospital of Philadelphia to fund research into rare auto-inflammatory diseases in children. Fairbanks lost her 23-day old grandchild Zeke to one such disease, called NLRC4-MAS Autoinflammatory Disease. It is caused by a newly identified mutation in the NLRC-4 gene, which is also shared by other members of Fairbanks' family.

It causes chronic inflammation which can become so severe the entire body shuts down, which is what happened to Zeke.

During the walk, local businesses contributed to a raffle and 12 gift certificates and prizes were given out at the end of the walk, held at the Sail Loft.

Those interested in contributing to the memorial fund can visit chop.donordrive.com/campaign/zekesmemory.

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