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NMOtion™ Blog

Discussing NMO Research and Advocacy

Spreading the word about NMO

A fundraiser founded by a Coquitlam mother “out of frustration and distress” will continue for the second year at Port Moody’s Rocky Point Park on Sunday.

Nancy Reimer said she needed to do something to build awareness and collect cash for research into the rare disease her son was diagnosed with three years ago.

Riley was seven when his central nervous system attacked his optic nerves, causing temporary paralysis. Doctors later confirmed the boy had neuromyelitis optica (NMO), or Devic’s disease, a syndrome that has no cure and is not known to be hereditary.

“It’s sort of like that strike of lightning,” Reimer said.

In B.C., about 150 people have been diagnosed with NMO, which is often confused with MS and typically affects women between the ages of 20 and 40.

Hoping to draw attention to the cause, Reimer last year hosted the world’s first NMO charity walk at Rocky Point Park, an event “born out of frustration and distress. I couldn’t stand around and say thank you for the diagnosis. This was my way of doing something.”

The inaugural walk attracted 370 supporters and brought in $25,000 for the NMO clinic at UBC as well as the Guthy-Jackson Charitable Foundation in San Diego.

This year’s numbers are also looking promising: When the online registration closed Thursday, already 407 people had signed up to participate.

Reimer believes there has been more attention to the disease over the past year; as well, more people with NMO around the world have connected to get help.

As for Riley — a Grade 4 student at Coquitlam’s Eagle Ridge elementary school — he is doing well and recently celebrated his 10th birthday, his mom said.

• Registration for the second annual No More NMO 5 km walk/run on June 1 is $40 for adults and $20 for children. The event starts at 9 a.m. at Rocky Point Park in Port Moody and is sponsored by the Runners Den, Advanced Healing Arts, Personal Best Martial Arts, chiropractor Grant Kim and Yoga Rush. Visit nomorenmo.com for more information.