to our story of family, of faith,
of sacrifice, and of hope
Although Elisa Linton appeared completely normal at birth, she was diagnosed at the age of four with a rare genetic disorder called Sanfilippo syndrome, MPS lllB, for which there was no cure or treatment. Elisa lived to the miraculous age of 22 but Sanfilippo syndrome sadly claimed her life on October 31st, 2016. Her legacy lives on and continues to bring hope to other children and their families......
Who We Are
The SCRF is a grassroots charity in Canada that is solely run by volunteers. No Fundraising companies are used. We are proud to say that 96 cents of every dollar donated since it's inception in 1999 has been contributed to research.
The goal of our foundation is to fund medical research into Sanfilippo syndrome and it's related neurogenetic diseases.
Our Sanfilippo community has gown over the years as more children in Canada have been diagnosed with Sanfilippo syndrome. We are thankful for these families who have come on board and raised funds on behalf of The SCRF in honour of their children. We are also grateful for the faithful and generous donations we've received from donors like you that has brought research and understanding of Sanfilippo syndrome to where it is today. Thank you!
News & Past Events
Thank you for helping us reach our $100,000 goal !
On September 18th, 2017, The SCRF iembarked on its third exciting fundraising adventure: Cycling Southern Ireland for six days and touring the historic and beautiful sights of Northern Ireland for four days.
Randall, Elisabeth and Connor Linton along with Jessica and Cameron Mason and Tamiko and David Barker will cycled distances of 45km to 60 km per day for 6 days, all in the hopes of raising funds for The SCRF Research Endowment Fund.
Thank you sponsoring our team on this amazing cycling adventure to Ireland in memory of Elisa and her friends who passed away this past year.
Hike For A Cure - Machu Picchu
Thank you to all who supported our teams efforts as we hiked the Inca Trail raising over $200,000.
The Elisa Linton Center For
Rare Disease Therapies
In 2013, Abeona Therapeutics was created to transform scientific discoveries in genetic research into breakthrough gene therapies for children and adults living with rare and life-threatening diseases such as Sanfilippo syndrome. In October 2017 they celebrated the ground-breaking of the first medical gene therapy manufacturing facility in Ohio. This Cleveland-based facility as graciously named “The Elisa Linton Center for Rare Disease Therapies” and will house the next generation of gene therapies for patients with rare disease and facilitate the commercial entry of pipeline products. The 6,000 square foot Center was built-out and validated over the following months and the grand opening took place this past May. The Linton family and friends were honoured to attend both the ground breaking and opening ceremonies where both Elisa’s life and Abeona’s progress was celebrated.
“We are very excited to announce the creation of The Elisa Linton Center for Rare Disease Therapies, which will be a global resource for production of gene therapies with the potential to bring new treatments to rare disease patients around the world,” said Timothy J. Miller, Ph.D., Chief Scientific Officer & President of Abeona Therapeutics. “It is especially fitting that this center is named for Elisa Linton, who was born with Sanfilippo syndrome, a rare terminal disease. The memory of Elisa and courage of her family continue to be a great inspiration to all members of the rare disease community.”
Gwendolen Park Bench Dedication
In May 2017, a park bench was dedicated in Elisa’s memory in Gwendolen Park, three houses down the street from her home. This amazing act of love was initiated by dear family friend Tracy Keenan, who rallied friends and neighbours of West Lansing to donate money to make it happen. Tracy and her husband Bill made sure the bench was strategically placed so that it faced the playground where Elisa would sit in her wheelchair and watch children play. It’s also in line with the south-west corner of our home, facing both of Elisa’s bedrooms, where she resided all of her 22 years. A big thank you to Tracy and our amazing community here in West Lansing for making this lasting tribute possible. We think of our dear Elisa every time we sit in the shade on her bench.
Elisa Linton Friendship Award 2019
June 27, 2019
In June 2018 The Elisa Linton Linton Friendship Award was created at Willowdale Middle School (WMS) to honour a graduating student, whom the schools feels should be recognized for their leadership through creating an inclusive environment and positively impacting the life or lives of students with special needs and /or learning challenges, in or outside of the school. They will have strong academic standing along with a positive reputation and character.
Because Elisa’s illness significantly affected her abilities physically and mentally, her early years at school were truly enriched by friends who were inclusive, cared for her and helped her reach her full potential. It is in this spirit that Elisa was loved, included and embraced that this award was created.
WMS is where Jessica and Connor Linton attended and many of Elisa’s friends from her community. They “adopted” Elisa and her cause about 15 years ago and have raised thousands for The SCRF. The 2019 award was proudly presented to Dylan Smith.
SCRF Endowment Fund to Ste. Justine Children’s Hospital
Nov. 8, 2017
One year to the day of saying our final farewell to Elisa, the Linton family and friends joined the team at Ste. Justine Children’s Hospital in Montreal for the dedication of The Elisa Linton Sanfilippo Research Laboratory. This was all made possible through a $1 Milliongrant to establish The SCRF Endowment Fundat this fabulous institution.The Foundation felt it was important at this time to establish a lab here in Canada with a dedicated research team that will ensure Sanfilippo research continues indefinitely. This lab, headed by Dr. Alexey V. Pshezhetsky, professor at the Université de Montréal and researcher with the Metabolic Health and Complex Diseases Research Axis at CHU Sainte-Justine’s Research Centre, discovered the gene mutation for Sanfilippo C with funding from The SCRF back in 2006 and continues to research potential treatments and therapies. Dr. Pshezhetsy and his team was chosen because of his contributions to the advancement of Sanfilippo knowledge worldwide and ongoing work with the disease.
Dr. Pshezhetsky states, “This donation will significantly accelerate the development of therapy for serious childhood diseases, like Sanfilippo and will pave the way for a cure for other pediatric neurodegenerative disorders caused by protein defects”.
Climb for A Cure - Mount Kilimanjaro
Thank you to all who participated and sponsored this amazing and life changing climb. $235,000 was raised for research!
Why the Red Rose ?
Many people have asked why the red rose was chosen as the symbol for the SCRF. In early June 1998 Elisa had a fascination with flowers, particularly roses.
One day she was in the back yard with Randall watching him cut spent rose blooms from our rose bushes. When he was finished she picked up the snips and began to cut red rose buds well before they were ready to bloom. After explaining to her why she shouldn't cut the rose buds, we put the beautiful flowers-to-be in a vase and placed them in the kitchen.
For several days we watched the flowers open and fill the kitchen with beautiful colour and fragrance. Unfortunately, the talk didn't help because Elisa continued to cut rose buds before their time.
Dendekker Community Fundraiser
Thank you to the Dendekker family and community in the Hamilton area for the amazing musical event raising over $100,000 for research. People came from near and far to hear many talented musician who donated their time to support their family and our cause.