Khartum Shrine

This year, my First Lady’s Project will be iPADs to facilitate a research project at Shriners Hospitals for Children – Canada in the field of Arthrogryposis multiplex congenita (AMC) and build a database. Arthrogryposis multiplex congenita (AMC) is clinically defined as congenital joint contractures in two or more areas of the body; meaning affected joints become permanently fixed in a flexed or extended position. This rare condition can completely or partially restrict joint movement, impacting the joint function and range of motion. Arthrogryposis affects approximately one in 3,000 people.

 

This research project, lead by the research team at Canada Shriners Hospital, will gather data from over 300 families, including prenatal history, birth, their first few months of life and a functional assessment providing current information on the child’s mobility, contractures, joints, level of autonomy in their daily life, pain level and quality of life. Paired with their history of medical procedures, this information will give a better understanding of the child’s medical and clinical needs. The ultimate goal of this database is to map out the relationships between the physical traits―or phenotype ―and the genotype. As the only Canadian Hospital with a multidisciplinary AMC Clinic, AMC patients seek their expertise.

 

One of the main fundraisers for this Project will be a virtual Walk for Love from May 21 -- 31. Please see https://donate.lovetotherescue.org/khartumshrineladies to donate or join a team. You can walk anywhere from anywhere and contribute in Canadian or US dollars. If you would like to be a sponsor, please call 204-925-1430.