Rare Disease Activist Simon Ibell Remembered for Inspiration, Bravery

Rare Disease Activist Simon Ibell

Rare Disease Activist Simon Ibell

Activist and speaker Simon Ibell, 39, died peacefully in his sleep on Friday, May 26, according to his brother-in-law Cameron Gilbert.

Ibell, founder and CEO of the iBellieve Foundation, was a crusader in the rare disease community. As one of 30 people in Canada and approximately 2,000 worldwide born with a condition known as MPS II (mucopolysacharridosis type II) or Hunter syndrome, he traveled the world searching for a cure for his own disease, becoming a crusader for the entire rare disease community.

Ibell delivered the keynote address at ACRP’s 2015 Global Conference & Exhibition in Salt Lake City, Utah.

“After attending his talk, what inspired me most was his positive attitude and sense of humor,” recalls Anne Blanchard, CCRA, CEO and clinical operations manager with Blanchard & Associates. “This is very sad news. He was such a great person and an inspiring example,” she adds.

After his diagnosis, doctors told Ibell’s parents he would not live past age five and were astounded by Ibell’s longevity, describing him as a “best-case scenario,” according to the Times Colonist newspaper.

“I am so grateful for the opportunity to have met Simon, to have bonded with him over our shared Canadian roots, and to have had him share his story with attendees at our meeting in Salt Lake City,” says ACRP Workforce Innovation Officer Terri Hinkley, RN, BScN, MBA, CCRC, FACRP. “He came to us as a highly recommended speaker. After having met him, I understood why. He was funny, engaging, down-to-earth, and so open about both the challenges and opportunities of living with a rare disease.”

In lieu of flowers, Ibell’s family requests donations be sent to the iBellieve Foundation.

Author: Michael Causey