The 2022 Silent Auction is now closed. Thank you to all that participated and supported the Ontario Rett Syndrome Association this year. O.R.S.A. met 43.5% of the goal, raising $2,175.00. Payments are coming in and the items are being packaged and will be shipped in the next 3 – 5 days. Of course there are some participants that opted to pick up their items. Those have been packaged and many have already been picked up. 10
Thank you for supporting O.R.S.A., together we are building healthy tomorrows.
The Auction is being held on-line and the 2022 Run is virtual. There are over 100 items to bid on. Take a look prior to going live and share the link with friends, family and co-workers.
More children’s items to select from this year! Such as; Disney Princess Prime 3D Puzzle, Harry Potter Prime 3D Puzzle, Fortnite Battle Royale Collections and Indoor Safe Flying Discs to name a few. As always, for the serious collector, some autographed Blue Jays Photo’s and Jerseys. Be sure to view the multi Signed Toronto Blue Jays 16 x 20 Photo. Signed by White/Alomar/Molito/Carter/Olerud). Books, golf shoes, shirts, shorts, the list goes on.
Click here to take a look at the 18th annual Run4Rett Silent Auction.
Ontario Rett Syndrome Association was pleased to have Guest Speaker – Dr. Walter Kaufmann from Anavex Life Sciences to discuss ANAVEX2-73 clinical trial in Pediatric Patients With Rett Syndrome (EXCELLENCE) at the beginning of their 2022 Annual General Meeting.
You’re invited to the virtual Run4Rett, taking place from October 1st to October 31st, 2022.
October is Rett Awareness month, what better way to raise awareness!
Run by yourself or with friends and family – you can run whenever, wherever – run on a treadmill, around your neighbourhood or any course of your choosing. This is an opportunity to unite via social media with other families and friends supporting the same cause. Again this year we unite in our own backyard instead of Richmond Hill. You will have your own finish line, but you won’t be alone! You will be connected together with the unbreakable spirit of all our loved ones with Rett syndrome.
You can set up a fundraising page through your Running Room account, after you have registered for the Run.
The 18th annual 1k and 5k walk / run is a signature fundraiser for the Ontario Rett Syndrome Association (O.R.S.A.).
All proceeds fund crucial activities organized by O.R.S.A.’s volunteer board of directors. These include:
Funding of 3 Rett syndrome clinics in Ontario
The Hope Fund which provides grants to Canadian researchers
Bi-annual family conference and medical symposium
The Canadian Rett Syndrome Registry
Please JOIN US! Walk or run for the 1K or 5K with your social circle! Share your pictures with us to be featured on social media.
Register Online with the Running Room – Registration Closes October 31st
The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of one research grant totaling $50,000 from The Hope Fund for 2022. The Hope Fund has funded over $678,000 in Canadian research to date.
Grant applications were received and evaluated by O.R.S.A.’s Research Advisory Committee which is comprised of impartial and prominent neurologists, geneticists and scientists from across Canada. O.R.S.A. would like to thank all those individuals that applied for this grant.
The Hope Fund was established in 2014. The funds for this research grant were raised through donations and fundraising activities. O.R.S.A. continues to support research excellence and the development of a wide scope of Rett syndrome research across Canada.
We are pleased to award $50,000 plus indirect costs to Dr. Ellis and Dr. Zani to support their research titled: Astrocyte-derived Extracellular Vesicles to Rescue Rett Syndrome Neurons
Lay Summary:
Rett syndrome (RTT) neurons have shorter extensionscalled dendrites, and fewer synapses that interconnect neurons.RTT astrocytes are less ableto support maturation of these dendrites and synapses. Astrocytes release small dropletscalled exosomes containingmessages in the form of genetic material called microRNA.Exosomesdeliver thecargo to nearby neurons or into the bloodstream, and limitedevidence (PNAS2019) suggeststhathealthy exosomes rescueRTT neurons. However, it is not known if theexosomes are fromastrocytes, and their microRNA cargo was not examined.We willpurify exosomes from human astrocytes andtest their ability to rescue the shapeand activity of RTT neurons. First, we will produceastrocytes fromhealthy and RTT patient induced pluripotent stem cells (iPSC). Exosomes will be isolated, and theirqualitydetermined by electron microscopyandprotein markers.The microRNA cargo will be sequencedand the exosomes testedfor rescue of RTT neuron shapeand activity. We expect to findonly healthyexosomes are able to rescue, and that specificmicroRNAs are responsible. Our findings will advance the understanding of astrocyte biology,and will define a role forastrocyte microRNAs for rescuing RTT neuronsas a step towardsa potentialexosome mediatedtreatment.
James Ellis, PhD
Hospital for Sick Children, Toronto Canada
Dr. Ellis completed his BSc at McGill University and his PhD at the University of Toronto with Dr. Alan Bernstein developing retrovirus vectors for gene targeting. His Post-Doctoral Fellowship studying the beta-globin Locus Control Region was mentored by Dr. Frank Grosveld in London UK. Dr. Ellis established his own research team at the Hospital for Sick Children in Toronto in 1994 with a focus on gene therapy for Sickle Cell Anemia. He subsequently developed MECP2 vectors for Rett syndrome, and vectors with reporter genes that mark specific cell types. For example, the EOS vectors express specifically in pluripotent stem cells and facilitate generation of patient induced Pluripotent Stem (iPS) cells. The Ellis lab currently uses these iPS cells in collaborative research teams to model Rett syndrome, Autism Spectrum Disorders and cardiomyopathies. New research directions concentrate on post-transcriptional regulation during human neurodevelopment, and the transfer of microRNA via extracellular vesicles. Dr. Ellis is Research Integrity Advisor at the Hospital for Sick Children.
Dr. Zani is a Neonatal and Paediatric Surgeon at the Hospital for Sick Children in Toronto, Associate Professor at the Department of Surgery, University of Toronto, and Scientist in the Development and Stem Cell Biology Program at the Peter Gilgan Centre for Research and Learning, SickKids, Toronto, Canada. His clinical interests are congenital anomalies and minimally invasive surgery, and his research focuses on neonatal and pediatric conditions with high morbidity and mortality rates. The Zani lab studies extracellular vesicles (EVs), which are nanoparticles released by all cells for intercellular communication. As EVs carry cargo similar to their cells of origin, EVs can be pathogenesis mediators, biomarkers of disease severity, and therapeutic agents. Among various EV-based projects, the Zani lab has recently been investigating the signatures of EVs isolated from induced plurip
Light Canada Purple Submissions
Last Updated: 11/15/2022 by Steve
We would love to see your photos of iconic locations or local supporters that were lit purple for Rett Syndrome.
Run4Rett Submissions
Last Updated: 11/15/2022 by Steve
RUN4RETT Silent Auction
Last Updated: 11/01/2022 by admin
The 2022 Silent Auction is now closed. Thank you to all that participated and supported the Ontario Rett Syndrome Association this year. O.R.S.A. met 43.5% of the goal, raising $2,175.00. Payments are coming in and the items are being packaged and will be shipped in the next 3 – 5 days. Of course there are some participants that opted to pick up their items. Those have been packaged and many have already been picked up.
10
Thank you for supporting O.R.S.A., together we are building healthy tomorrows.
Light Canada Purple Video
Last Updated: 11/01/2022 by Steve
We are excited to share our new video and hope you share it with family and friends.
New Awareness Resources
Last Updated: 11/01/2022 by Steve
18th Annual Run4Rett Silent Auction is On-Line!
Last Updated: 10/18/2022 by admin
Bidding Opens: Saturday, October 1st at 9:00 a.m.
Bidding Closes: Sunday, October 16th at 9 p.m.
The Auction is being held on-line and the 2022 Run is virtual. There are over 100 items to bid on. Take a look prior to going live and share the link with friends, family and co-workers.
More children’s items to select from this year! Such as; Disney Princess Prime 3D Puzzle, Harry Potter Prime 3D Puzzle, Fortnite Battle Royale Collections and Indoor Safe Flying Discs to name a few. As always, for the serious collector, some autographed Blue Jays Photo’s and Jerseys. Be sure to view the multi Signed Toronto Blue Jays 16 x 20 Photo. Signed by White/Alomar/Molito/Carter/Olerud). Books, golf shoes, shirts, shorts, the list goes on.
Click here to take a look at the 18th annual Run4Rett Silent Auction.
Thank you for supporting Rett syndrome.
2022 AGM Presentation with Dr. Walter Kaufmann from Anavex Life Sciences
Last Updated: 11/01/2022 by admin
Ontario Rett Syndrome Association was pleased to have Guest Speaker – Dr. Walter Kaufmann from Anavex Life Sciences to discuss ANAVEX2-73 clinical trial in Pediatric Patients With Rett Syndrome (EXCELLENCE) at the beginning of their 2022 Annual General Meeting.
Run4Rett – Virtual – October 2022
Last Updated: 11/01/2022 by admin
You’re invited to the virtual Run4Rett, taking place from October 1st to October 31st, 2022.
October is Rett Awareness month, what better way to raise awareness!
Run by yourself or with friends and family – you can run whenever, wherever – run on a treadmill, around your neighbourhood or any course of your choosing. This is an opportunity to unite via social media with other families and friends supporting the same cause. Again this year we unite in our own backyard instead of Richmond Hill. You will have your own finish line, but you won’t be alone! You will be connected together with the unbreakable spirit of all our loved ones with Rett syndrome.
You can set up a fundraising page through your Running Room account, after you have registered for the Run.
The 18th annual 1k and 5k walk / run is a signature fundraiser for the Ontario Rett Syndrome Association (O.R.S.A.).
All proceeds fund crucial activities organized by O.R.S.A.’s volunteer board of directors. These include:
Please JOIN US! Walk or run for the 1K or 5K with your social circle! Share your pictures with us to be featured on social media.
Register Online with the Running Room – Registration Closes October 31st
Download Pledge Sheet
2022 Annual General Meeting
Last Updated: 08/11/2022 by Steve
Wednesday, August 31th, 2022
8:00pm – 10:00pm
All are welcome to join.
Members have been sent a package with proxy form via email.
Please join using this link: Click here to Launch Zoom Meeting
Here is a copy of our Presidents Letter
AGENDA
Click Here for a 2022 Proxy Form
2022 Research Grant Awarded
Last Updated: 06/24/2023 by Bryan Higgins
The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of one research grant totaling $50,000 from The Hope Fund for 2022. The Hope Fund has funded over $678,000 in Canadian research to date.
Grant applications were received and evaluated by O.R.S.A.’s Research Advisory Committee which is comprised of impartial and prominent neurologists, geneticists and scientists from across Canada. O.R.S.A. would like to thank all those individuals that applied for this grant.
The Hope Fund was established in 2014. The funds for this research grant were raised through donations and fundraising activities. O.R.S.A. continues to support research excellence and the development of a wide scope of Rett syndrome research across Canada.
We are pleased to award $50,000 plus indirect costs to Dr. Ellis and Dr. Zani to support their research titled: Astrocyte-derived Extracellular Vesicles to Rescue Rett Syndrome Neurons
Lay Summary:
Rett syndrome (RTT) neurons have shorter extensionscalled dendrites, and fewer synapses that interconnect neurons.RTT astrocytes are less ableto support maturation of these dendrites and synapses. Astrocytes release small dropletscalled exosomes containingmessages in the form of genetic material called microRNA.Exosomesdeliver thecargo to nearby neurons or into the bloodstream, and limitedevidence (PNAS2019) suggeststhathealthy exosomes rescueRTT neurons. However, it is not known if theexosomes are fromastrocytes, and their microRNA cargo was not examined.We willpurify exosomes from human astrocytes andtest their ability to rescue the shapeand activity of RTT neurons. First, we will produceastrocytes fromhealthy and RTT patient induced pluripotent stem cells (iPSC). Exosomes will be isolated, and theirqualitydetermined by electron microscopyandprotein markers.The microRNA cargo will be sequencedand the exosomes testedfor rescue of RTT neuron shapeand activity. We expect to findonly healthyexosomes are able to rescue, and that specificmicroRNAs are responsible. Our findings will advance the understanding of astrocyte biology,and will define a role forastrocyte microRNAs for rescuing RTT neuronsas a step towardsa potentialexosome mediatedtreatment.
James Ellis, PhD
Hospital for Sick Children, Toronto Canada
Dr. Ellis completed his BSc at McGill University and his PhD at the University of Toronto with Dr. Alan Bernstein developing retrovirus vectors for gene targeting. His Post-Doctoral Fellowship studying the beta-globin Locus Control Region was mentored by Dr. Frank Grosveld in London UK. Dr. Ellis established his own research team at the Hospital for Sick Children in Toronto in 1994 with a focus on gene therapy for Sickle Cell Anemia. He subsequently developed MECP2 vectors for Rett syndrome, and vectors with reporter genes that mark specific cell types. For example, the EOS vectors express specifically in pluripotent stem cells and facilitate generation of patient induced Pluripotent Stem (iPS) cells. The Ellis lab currently uses these iPS cells in collaborative research teams to model Rett syndrome, Autism Spectrum Disorders and cardiomyopathies. New research directions concentrate on post-transcriptional regulation during human neurodevelopment, and the transfer of microRNA via extracellular vesicles. Dr. Ellis is Research Integrity Advisor at the Hospital for Sick Children.
Ellis Lab website http://lab.research.sickkids.ca/ellis/
Augusto Zani, MD, PhD
Hospital for Sick Children, Toronto Canada
Dr. Zani is a Neonatal and Paediatric Surgeon at the Hospital for Sick Children in Toronto, Associate Professor at the Department of Surgery, University of Toronto, and Scientist in the Development and Stem Cell Biology Program at the Peter Gilgan Centre for Research and Learning, SickKids, Toronto, Canada. His clinical interests are congenital anomalies and minimally invasive surgery, and his research focuses on neonatal and pediatric conditions with high morbidity and mortality rates. The Zani lab studies extracellular vesicles (EVs), which are nanoparticles released by all cells for intercellular communication. As EVs carry cargo similar to their cells of origin, EVs can be pathogenesis mediators, biomarkers of disease severity, and therapeutic agents. Among various EV-based projects, the Zani lab has recently been investigating the signatures of EVs isolated from induced plurip
Zani Lab website: https://lab.research.sickkids.ca/zani/