A premiere in Canada for the Sanfilippo desease research

Today, November 8, 2017, the CHU Sainte-Justine celebrated the extraordinary commitment of $1 million from The Sanfilippo Children’s Research Foundation (SCRF) and the Linton family to support research on Sanfilippo disease, a rare neurodegenerative disease for which there is currently no cure.

This donation will allow the creation of The Sanfilippo Children’s Research Endowment Fund, which will ensure the sustainability of research on this disease. A powerful gesture all the more meaningful for Elisabeth and Randall Linton, founders of the SCRF, as it honours the memory of their youngest daughter Elisa, whose life was claimed by the disease at the age of 22, on October 31, 2016.

“Our family is thrilled that this donation, made possible by the many people who financially supported The Sanfilippo Children’s Research Foundation and whose hearts were inspired by our daughter Elisa, will advance the ground-breaking research at the CHU Sainte-Justine here in Canada. It’s too late for Elisa, but we’re in a race against time battling this disease. We know that other children and their families will benefit from future advances in research”, said Mrs. Elisabeth Linton, Executive Director of The SCRF, accompanied by her husband, Randall, and their children, Jessica and Connor.

The SCRF and the Linton family see this gift as a loving tribute to their daughter, and a symbol of hope for the children and families struggling with this devastating disease. This hope could soon become reality, thanks to Professor Alexey V. Pshezhetsky, researcher with the Metabolic Health and Complex Diseases Research Axis at the CHU Sainte-Justine’s Research Centre, who was chosen by the SCRF and the Linton family for his exceptional scientific career. Over the years, his research has been recognized by several national and international organizations. His contributions to the field of human genetics have earned him many awards and grants. Professor Pshezhetsky is also one of the few, and best, researchers in the world to devote significant research to Sanfilippo disease. In 2006, he and his team identified one of the genetic causes of the disease named Sanfilippo type C. .