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2005 patient support meeting

PC Project Patient Support Meeting (PSM)
August 25-27, 2005. Ft. Erie, Ontario [Niagara Falls]
This patient meeting was our largest - and, we think, the very best one - to date. “It changed my life,” said one PCer. “I’ll never be the same again.” Over 100 people attended, including 12 scientists and doctors, 37 PCers (including 13 children with PC), and many supportive friends and family members.

Photos, slideshow and videos of meeting presentations are available through the Patient Message Board 'protected pages link' at the top left on the Patient Message Board site. Log in to the Patient Message Board and click the link to access.

Thursday evening – Registration, a summer supper, introductions, and overview of the conference.

Friday – For adults, the day was devoted to learning about PC, current PC research projects and discussing how we feel and deal with PC. We also had a very interesting learning activity for both patients and doctors. PCers first grouped themselves with others who shared similar phenotypes (external PC symptoms). Then they grouped by actual mutations. We all learned how alike PCers are, but we also discovered how different PCers are from each other, even when they have similar mutations.

For the 26 children who came, separate classes were held with games, activities, crafts and an afternoon trip to Zooz. (keep the link to Zooz here?) These activities allowed children with PC to have an informal opportunity to make friends with others who share their rare condition.

Friday evening - We took a bus tour along the beautiful Niagara River for a scrumptious buffet dinner at Queenston Heights, followed by fireworks at the Falls.

Saturday – Children with PC joined the adults this morning for a DNA making activity and a children’s discussion. Later, PC children joined their peers in the regular children’s activities while the adults discussed care and help from doctors. We thank our panel of doctors who took time to meet with us, help us, and learn from us.

One great advantage of having so many PCers together in one place was the opportunity to collect photographs and samples to help further learning and research. PCers voluntarily participated at various times throughout the conference in providing a variety of samples for research. These things are priceless

Saturday afternoon and evening – To end our conference, Mary Schwartz invited us to Heritage Homestead, (link to those photos) a beautiful place close to Fort Erie, where she has restored the original home her ancestors built and settled in. We entered the past as we participated in activities reminiscent of earlier times such as wagon rides, making apple cider, catching frogs in the pond, and ??? We enjoyed a home-cooked meal, then said our thank yous and our goodbyes, and like our new PC friend expresed, we knew we’d never be the same!

Click here for the complete program: 2005 Patient Support Meeting Program

Event Flyer

Event Schedule

Niagara Area Links

Holiday Inn, Ft. Erie, Ontario - meeting site

Zooz - site for Field Trip for kids

Niagara Parks (The Falls and more)

Niagara Tourist Information

Fort Erie (a Fort from the War of 1812)

Heritage Homestead (a few photos of our heritage farm)