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An exceptional gift to support the CHU Sainte-Justine expertise and excellence in Sanfilippo disease research

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Thursday, November 09, 2017

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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. The CHU Sainte-Justine Foundation is deeply moved by the Toronto-area family's gesture of incredible generosity and solidarity. 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. Few children survive beyond the first fifteen years of life. Elisa miraculously lived until she was 22 years old.

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.

"Sanfilippo disease is a mucopolysaccharide disorder type III (MPS-III), a disease that affects the lysosome, the cell compartment responsible for the breakdown and recycling of molecules. It causes progressive neurodegeneration in infants and children, leading to mental impairment and often to death between the ages of 10 and 20," explained Professor Pshezhetsky. "This donation will significantly accelerate the development of therapy for serious childhood diseases, like MPS III, and will pave the way for a cure for other pediatric neurodegenerative disorders caused by protein defects."

To mark The SCRF's extraordinary support and to honour the memory of Elisa Linton, the laboratory headed by Professor Pshezhetsky will be named The Elisa Linton Sanfilippo Research Laboratory.

"Supported by international collaboration with various experts and pan-Canadian scientific cooperation, the laboratory's multidisciplinary team is a testament to the importance of creating a health research consortium. This approach will ensure the sustainability of research into Sanfilippo disease and lead to important breakthroughs that will save lives. I am very pleased to have the commitment of the Sanfilippo Children's Research Foundation and the Linton family, as it shows their confidence in the excellence and expertise of our researchers. It is a confidence that once again demonstrates our institution's research leadership on rare diseases," said Dr. Fabrice Brunet, CEO of the CHUM-CHU Sainte-Justine.

"The CHU Sainte-Justine Foundation is honoured to welcome The Sanfilippo Children's Research Foundation and the Linton family as one of the major donors to the Healing More Better campaign. I would like to thank them very much. It is with great pride that we recognize their invaluable contribution, which will allow the CHU Sainte-Justine's researchers to make major advances in the development of curative treatments for Sanfilippo disease. But most importantly, they are offering children and families affected by this disease hope for a better quality of life and the dream of a cure," said Mrs. Maud Cohen, President and CEO of the CHU Sainte-Justine Foundation.

Thank you, from the bottom of our hearts, to the Sanfilippo Children's Research Foundation and the Linton family for their exceptional support and their gesture of generosity, affection and unwavering solidarity towards children and families affected by Sanfilippo disease.

About the CHU Sainte-Justine Foundation
The CHU Sainte-Justine Foundation's mission is to engage the community and support the CHU Sainte-Justine in its pursuit of excellence and its commitment to providing children and mothers with one of the highest levels of healthcare in the world, now and in the future. fondation-sainte-justine.org/en/

About the CHU Sainte-Justine
The Sainte-Justine university hospital centre (CHU Sainte-Justine) is the largest mother-child centre in Canada and the second largest pediatric hospital in North America. A member of the Université de Montréal extended network of excellence in health (RUIS), Sainte-Justine has 5,664 employees, including 1,578 nurses and nursing assistants; 1,117 other healthcare professionals; 502 physicians, dentists and pharmacists; 822 residents and over 200 researchers; 300 volunteers; and 3,400 interns and students in a wide range of disciplines. Sainte-Justine has 484 beds, including 35 at the Centre de réadaptation Marie Enfant (CRME), the only exclusively pediatric rehabilitation centre in Quebec. The World Health Organization has recognized CHU Sainte-Justine as a "health promoting hospital." chusj.org

About the Sanfilippo Children's Research Foundation
In 1999, with faith and determination, we, Elisabeth and Randall Linton, formed The Sanfilippo Children's Research Foundation (SCRF) right after our youngest daughter, Elisa, was diagnosed with the Sanfilippo disease. Our goal is to fund medical research to find a cure for Sanfilippo and its related neuro-genetic disorders. We are the only foundation in Canada raising funds for Sanfilippo research. In almost 18 years, over $7.5M has been raised with a remarkable 96% of every dollar donated being committed to research. More than 35 research projects have been initiated worldwide due to the efforts of The SCRF. While Sanfilippo occurs once in 24,000 births, successful research into the disease could apply directly to related genetic conditions that affect 1 child in 5,000. Elisa lived to the miraculous age of 22 but Sanfilippo disease sadly claimed her life on October 31, 2016. alifeforelisa.org

Source: CHU Sainte-Justine Foundation
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