P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

18th Annual Run4Rett Silent Auction is On-Line!

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

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

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 

Download Pledge Sheet

2022 Annual General Meeting

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


  1. Introductions
    1. Proxy Forms
  2. Approval of Agenda
  3. Approval of Minutes of Thursday, August 26, 2021 AGM
  4. President’s Letter
  5. Treasurer’s Report
  6. Appointment of Auditor
  7. Reports from Committees
  8. Election of Directors
  9. Guest Speaker – Dr. Walter Kaufmann, Anavex Life Sciences
  10. Adjournment

Click Here for a 2022 Proxy Form

2022 Research Grant Awarded

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/