By Charles de Broin
Société du syndrome d’Angelman
The idea of offering a respite home for Angelman children was first conceived by Paolo Di Vito, Sophie Dubé and a handful of parents and friends who were willing to dedicate time and energy to the cause. The idea was to offer a safe and welcome home away from home to children with Angelman Syndrome.
The Foundation du Syndrome d’Angelman ( angelman.ca ) obtained its letters patent in May of 2005 creating a non profit corporation for people touched by Angelman Syndrome, to promote research on the syndrome, to offer a stimulating environment for individuals afflicted with the syndrome and provide support to those nearest to them. The goal of the organization was to gather funds to purchase a property to form a treatment center for Angelman children and adults and bring a much needed support to their families. Under our charter the Foundation is allowed to receive donations, organize fundraising events and ultimately create community awareness for individuals with Angelman Syndrome.
With the help of the Montreal community, many fundraising events were hosted and in 2010 the property was purchased. The property was formerly the head office of a swimming pool sales and warehouse with a solid commercial building of over 13,000 square feet.
Refurbishing of the building to our needs required additional funds and part of the building was rented as a daycare facility.
Retrofits to the building included the construction of indoor and outdoor swimming pools, activity rooms, a cafeteria, a cinema room, a gym, respite rooms, a sensory room, offices and washroom facilities. Final finishing work remains to be completed and adapted equipment for the specialty rooms still need funding.
The Foundation established a partnership with WIAIH ( http://wiaih.qc.ca ) a recognized local non profit community family support organization that will be operating the center. Operations started last fall. The center is already used to provide a day program for adults with special needs, an after school program for high school special needs young adults within a safe and structured environment. The respite portion will also be managed by the community organization and we hope to have it running in the very near future.
The project is no longer a dream but a reality and thanks to community involvement is evolving into a center where special needs children and adults can thrive in a safe, bright and happy place.
The project has evolved from the video presentation
(https://www.youtube.com/watch?v=9-hvKQfiOh4 ) but the concept is the same.