North York family donates funds to open research lab for Sanfilippo

Community Nov 13, 2017 by Fannie Sunshine North York Mirror

In a Canadian first, a research laboratory dedicated entirely to Sanfilippo disease has opened in Montreal, thanks to a $1 million donation from a North York family.

The donation was made by the Sanfilippo Children's Research Foundation, which was founded in 1999 by Elisabeth and Randall Linton, whose daughter, Elisa, was born with the rare, recessive autosomal genetic terminal disease. To date, the foundation, which was developed with the goal of funding medical research to find a cure for Sanfilippo and its related neuro-genetic disorders, has raised more than $7.5 million.

The CHU Sainte-Justine Foundation announced the creation of the Sanfilippo Children’s Research Endowment Fund on Wednesday, Nov. 8, which will ensure the sustainability of research on the disease.

The lab, headed by Professor Alexey V. Pshezhetsky, researcher with the Metabolic Health and Complex Diseases Research Axis at CHU Sainte-Justine’s Research Centre, will be named the Elisa Linton Sanfilippo Research Laboratory.

“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,” Pshezhetsky, who helped identify one of the genetic causes of the disease named Sanfilippo type C in 2006, said in a release.

Symptoms of Sanfilippo tend to show in preschool years in the form of developmental delays, with the child ultimately losing the ability to walk, talk and eat on their own. There is no cure or treatment, and most people born with Sanfilippo live into their teens. Combined, the four types of Sanfilippo disease presents in about one in 70,000 births.

Elisa died on Oct. 31, 2016, at age 22.

“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 groundbreaking research at the CHU Sainte-Justine here in Canada,” Elisabeth said in a release. “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.”


North York family donates funds to open research lab for Sanfilippo

The Montreal lab is the first in Canada dedicated to the disease

Community Nov 13, 2017 by Fannie Sunshine North York Mirror

In a Canadian first, a research laboratory dedicated entirely to Sanfilippo disease has opened in Montreal, thanks to a $1 million donation from a North York family.

The donation was made by the Sanfilippo Children's Research Foundation, which was founded in 1999 by Elisabeth and Randall Linton, whose daughter, Elisa, was born with the rare, recessive autosomal genetic terminal disease. To date, the foundation, which was developed with the goal of funding medical research to find a cure for Sanfilippo and its related neuro-genetic disorders, has raised more than $7.5 million.

The CHU Sainte-Justine Foundation announced the creation of the Sanfilippo Children’s Research Endowment Fund on Wednesday, Nov. 8, which will ensure the sustainability of research on the disease.

The lab, headed by Professor Alexey V. Pshezhetsky, researcher with the Metabolic Health and Complex Diseases Research Axis at CHU Sainte-Justine’s Research Centre, will be named the Elisa Linton Sanfilippo Research Laboratory.

“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,” Pshezhetsky, who helped identify one of the genetic causes of the disease named Sanfilippo type C in 2006, said in a release.

Symptoms of Sanfilippo tend to show in preschool years in the form of developmental delays, with the child ultimately losing the ability to walk, talk and eat on their own. There is no cure or treatment, and most people born with Sanfilippo live into their teens. Combined, the four types of Sanfilippo disease presents in about one in 70,000 births.

Elisa died on Oct. 31, 2016, at age 22.

“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 groundbreaking research at the CHU Sainte-Justine here in Canada,” Elisabeth said in a release. “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.”


North York family donates funds to open research lab for Sanfilippo

The Montreal lab is the first in Canada dedicated to the disease

Community Nov 13, 2017 by Fannie Sunshine North York Mirror

In a Canadian first, a research laboratory dedicated entirely to Sanfilippo disease has opened in Montreal, thanks to a $1 million donation from a North York family.

The donation was made by the Sanfilippo Children's Research Foundation, which was founded in 1999 by Elisabeth and Randall Linton, whose daughter, Elisa, was born with the rare, recessive autosomal genetic terminal disease. To date, the foundation, which was developed with the goal of funding medical research to find a cure for Sanfilippo and its related neuro-genetic disorders, has raised more than $7.5 million.

The CHU Sainte-Justine Foundation announced the creation of the Sanfilippo Children’s Research Endowment Fund on Wednesday, Nov. 8, which will ensure the sustainability of research on the disease.

The lab, headed by Professor Alexey V. Pshezhetsky, researcher with the Metabolic Health and Complex Diseases Research Axis at CHU Sainte-Justine’s Research Centre, will be named the Elisa Linton Sanfilippo Research Laboratory.

“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,” Pshezhetsky, who helped identify one of the genetic causes of the disease named Sanfilippo type C in 2006, said in a release.

Symptoms of Sanfilippo tend to show in preschool years in the form of developmental delays, with the child ultimately losing the ability to walk, talk and eat on their own. There is no cure or treatment, and most people born with Sanfilippo live into their teens. Combined, the four types of Sanfilippo disease presents in about one in 70,000 births.

Elisa died on Oct. 31, 2016, at age 22.

“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 groundbreaking research at the CHU Sainte-Justine here in Canada,” Elisabeth said in a release. “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.”