Photo and article by Grant Lewis – Rare diseases are not all that rare. One in twelve Canadian kids have a rare disease. Remember, there are over 7,000 known rare diseases!!
Good news however. Genome sequencing has made huge advances in the past few years thanks to the collaborating of genome testing results across the country and around the world. CHEO in Ottawa and Sick Kids in Toronto have launched a “All for One” program. It is a “precision health partnership” to gather and sequence all genome testing in Canada. Data has been collected from over 4,000 rare disease patients and families. This data is then shared to the doctors of anxious families awaiting test results and treatment plans.
The Research Institute at Sick Kids involves hundreds of scientists and over 1,400 research trainees plus state of the art equipment, all studying rare diseases. The “All for One” program is just one of many ongoing programs bringing vital data together to combat rare diseases.
The Espanola Lions Club presented a cheque for $11,000 to help rare disease research thanks to the generosity of local businesses and individuals. The funds were raised through a draw and BBQ. At a recent lions meeting, Lion Andy McKechnie accepted the “big cheque” on behalf of the family. Alex and Kelsey and Iris Mae were actually in Toronto at the same time presenting a cheque to the Sick Kids Rare Disease Research and Initiative program for $50,000!!!!
Small town….HUGE heart!
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