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Raising a flag for rare diseases

Rare disease sufferers face long, gruelling process

February 28 is Rare Disease Day and the City of Barrie honoured the occasion with a Flag Raising at City Hall.

A crowd of about 20 people suffering from different diseases considered to be rare were on hand Friday with family and friends to see their plight acknowledged.

The battle is physical, but also very emotionally stressful as help from the provincial and federal level has long been scarce. Karolena Dempsey suffers from Schnitzler Syndrome (a disease that has affected just 500 in the world) and organized the event today.

“This has been such a long, gruelling process and I’m just so happy that people are starting to take notice,” said Dempsey. “To finally have different levels of government speaking up for us is very motivating and despite being a long way still to go, we now know we’re on the right path.”

Dempsey will continue her fight to Ottawa and then Vancouver over the next few months.

Alex Nuttall (MP of Barrie, Springwater and Oro-Medonte), Shawn Bubel (Chief of Staff for MP of Barrie and Innisfil John Brassard) and Councillor Doug Shipley (acting on behalf of Mayor Jeff Lehman were all on-hand to speak with those in attendance and to officiate the day. Councillor Shipley spoke of the importance of local government when it comes to be the voice for those who need it.

“There are many diseases that have been campaigned for, and for good reason,” said Shipley. “But these people here today are just starting their fight. They have been virtually unheard and that has to change. They are suffering and if those close to them in their own communities don’t stand up, who will?”

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Shawn Gibson

About the Author: Shawn Gibson

Shawn Gibson is a staff writer based in Barrie
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