The Program offers grants for the support of projects with amounts of up to $100,000 (two grants of $50,000 or one grant of $100,000) plus up to 10% indirect costs per year for a period of one year. Funds cannot be used to cover tuition costs.
Through this process, O.R.S.A. invites grant applications from professionals committed to conducting novel, emerging, or innovative research in areas relevant to the cure, cause, prevention, improved treatment and/or understanding of Rett syndrome and its implications on society. This program is provided to support current investigators and encourage new investigators to pursue research in Rett syndrome.
O.R.S.A. intends to provide awards to outstanding applicants who meet the eligibility criteria of the Program and who have been approved by its Research Grant Advisory Committee (the “Advisory Committee”). Further support is possible to existing funded projects by offering the option to renew funding upon the successful applicant’s re-application to the program.
For our second year in a row – Ontario Rett Syndrome Association has teamed up with Fielding Estate Winery with a hand selected packages great for the holidays. When you purchase any of the wine packages available, 25% will be donated back to Ontario Rett Syndrome Association. Delivery will be included throughout Ontario, but for other Provinces and Territories, accommodations can be made through Fielding Estate Winery.
Available Packages
Free Shipping within Ontario. Shipping available outside of Ontario.
When you click on the package you will be redirected to Fielding Estate Winery website to purchase your package. If you wish to order other items they carry or for all orders outside of Ontario the wine lodge is happy to assist you. Please call 1.888.778.7758 and reference our Rett fundraiser. Thank you for support.
As Rett syndrome Awareness Month draws to a close, let’s take the opportunity to say ‘thank you’ to Kevin Morton, past president. Thank you for the countless hours of volunteer time to coordinate, facilitate and keep O.R.S.A. true to its mission statement. Your dedication and forward direction over the years has been greatly appreciated by the O.R.S.A. board, families and friends but most of all those living with Rett Syndrome.
Anavex Life Sciences Corp is recruiting patients for their study of ANAVEX2-73 in Rett syndrome patients in British Columbia Children’s Hospital in Vancouver and Alberta Children’s Hospital in Calgary. The study is the first ever clinical trial for Rett syndrome in the Canada.
This is a 12-week study of ANAVEX2-73, a liquid medication administered by mouth, for the treatment of patients with Rett syndrome between 5-17 years of age. The study is randomized, meaning 2 out of 3 participants will receive the study drug and 1 out of 3 will receive placebo. The placebo is an inactive liquid solution that looks and tastes just like the study medication but has no effects. The study involves 4 in-person visits at the clinical site, and 4 phone calls. Participants that complete the trial will be offered the option to enrol in a 48-week Open Label Extension, where all participants will receive the active study drug (not placebo). Study visits will include collection of blood and urine, ECGs (measures electrical activity of the heart), physical examinations and questionnaires completed by the patient’s caregiver. Travel expenses related to visits, such as flights, mileage and food, will be reimbursed by the study.
If you are interested in participating and would like to be added to the contact list please email, Sabrina Millson at smillson@rett.ca.
Include the following details in your email:
Name
Province
Contact number
Love one’s name and date of birth
Vaccination status:
1st vaccine date and type
2nd vaccine date and type
For more information on the study, including full inclusion and exclusion criteria, please visit ClinicalTrials.gov:
Taysha Gene Therapies has shared the following updates from an educational event held this month with investors. Progress is continuing on TSHA-102, the investigational gene therapy for Rett syndrome. They plan to enroll patients 18 years or older for the first clinical trial.
You’re invited to the virtual Run4Rett, taking place from October 1st to October 31st, 2021.
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 17th 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.
This year we are expanding our October Awareness Campaign with reusable lawn signs.
These signs are available free of charge to O.R.S.A. members, friends, and family who are interested.
Lawn signs are available on a first come first serve basis. As the number of signs are limited, you may order up to 5 per address for you and family and friends.
Help us spread awareness and build our social feed. Take a photo and #ORSASTRONG and tag Ontario Rett Syndrome Association.
We have currently reached our stock limit for this year. Thank you to everyone that will be participating.
The Ontario Rett Syndrome Association (O.R.S.A.) was incorporated on July 26, 1991. Launched from a small group of parents, the organization has grown tremendously over the past 30 years. O.R.S.A. funds 3 Rett syndrome clinics, has awarded over $600,000 in research grants, organizes educational events, runs the Canadian Rett Syndrome Registry and provides resources for families.
To celebrate this milestone, we have launched two podcasts!
Listening To Hope celebrates recipients of grants from The Hope Fund. The first two episodes are available now. We will be releasing a new episode each Monday for the next 4 weeks.
Fact #1: Our 2021 grants have been awarded! O.R.S.A. has distributed over $600,000 in research grants from The Hope Fund to date. Our grants enable projects that would not otherwise get funding to move forward.https://t.co/nE2mC5FbQppic.twitter.com/F7knEhs2Dc
Fact #2: Gene Valeriote was O.R.S.A.'s first president. He served from 1991 – 2002. During his watch O.R.S.A. established itself as an invaluable resource for families in Ontario, launching a newsletter, memberships and educational conferences. pic.twitter.com/D2JgbifmfW
Fact #3: O.R.S.A.'s president from 2002 – 2010 was Gregg Bereznick. During this period, O.R.S.A. launched a website and established 3 clinics: CHEO, Toronto Western Hospital and Thames Valley. pic.twitter.com/KvfeEKKEZg
Fact #4: Terry Boyd was O.R.S.A.'s president from 2010 – 2016. Terry was instrumental in founding the clinc at CHEO, creating the Canadian Rett Syndrome Registry and launching the Hope Fund. She was awarded the Sovereign's Medal for Volunteers by the Governor General. pic.twitter.com/WzHPjhMRBe
Fact #5: Our president since 2016 is Kevin Morton. Kevin launched the Ref4Rett fundraiser with his wife Lory which has raised over $250,000. He has steered the organization through the challenging pandemic period. pic.twitter.com/N3goRlj93L
Fact #6: Our biggest fundraiser each year is Run4Rett. It is also a chance to catch up with other families and friends. We will be running a virtual race again this year but hope to be back in 2022! pic.twitter.com/wbd8c5ll31
Fact #7: O.R.S.A. is proud to partner with the International Rett Syndrome Foundation. We collaborate with I.R.S.F. on issues that impact individuals with Rett syndrome globally. pic.twitter.com/GnDQm4FlnV
Fact #9: Our first ever research grant was awarded in 2010 to Dr. John J. Greer at the University of Alberta. Dr. Greer studied respiratory disfunction in MECP2 deficient mice. You can read the results of his study here:
Fact #10: O.R.S.A. is here to support all individuals with Rett syndrome, including boys and men. We have a dedicated page on our website for information on Rett syndrome in males.https://t.co/BGvwtGKSWbpic.twitter.com/OxBugyrtv2
Fact #11: Uncorked Rett is our new, pandemic inspired, signature fundraising event. We teamed up with Fielding Estate Winery in Beamsville to offer great wine packages shipped to your door. Uncorked Rett will be back in time for the holiday season later this year! pic.twitter.com/MqkfNehG7v
Fact #13: O.R.S.A. is part of the Province of Ontario Neurodevelopmental (POND) Network: A research network striving to understand the biology underpinning neurodevelopmental disorders. We represent the Rett syndrome community at the patient advisory committee. pic.twitter.com/ravaPf6jzA
Fact #14: As a registered Canadian charity, O.R.S.A. is fully transparent. You can find our audited financial statements from the past 10 years on our website.https://t.co/zCp1DAjtT3pic.twitter.com/QZX4QJMkTM
Fact #15: Each year our communications committee organizes proclamations for Rett Syndrome Awareness month. We aim to have all of the towns and cities of our members represented. pic.twitter.com/HL6x8lPClX
Fact #17: A diagnosis of Rett syndrome can be devastating news. O.R.S.A. is here to help. Our family outreach coordinator Keri Ann is available to connect newly diagnosed families with the resources and connections they need. pic.twitter.com/0QxTTypOza
Fact #18: We are grateful for the 3rd party fundraising events that donate proceeds to O.R.S.A. each year. If you are thinking of hosting an event, our fundraising committee can help. pic.twitter.com/HiFuvcnae2
Fact #19: In 2010, with support from Dr. Victoria Siu, a Rett syndrome clinic was established at Thames Valley Children’s Centre (TVCC) in London. O.R.S.A. provides ongoing support to the clinic which provides a multidisciplinary team for care coordination. pic.twitter.com/V7aWfxKCWF
Fact #20: O.R.S.A. has awarded over $500,000 in research grants since 2014. Each donation to The Hope Fund goes directly to research with no administrative fee taken by O.R.S.A.https://t.co/kkURCsHWKnpic.twitter.com/dsWrNWJw9I
Fact #21: Our mission – The Ontario Rett Syndrome Association (O.R.S.A.) exists to ensure that children and adults with Rett syndrome are enabled to achieve their full potential and enjoy the highest quality of life within their community. pic.twitter.com/UDdKlUwjCn
Fact #23: The Rett Classic golf tournament, one of our signature fundraising events, has been run annually since 2005. We missed the past two years due to COVID-19 but hope to be back next year. pic.twitter.com/lhccN8XDk2
Fact #24: O.R.S.A. values your feedback. If your family attends one of our Rett clinics, please consider completing our clinic satisfaction survey. We would love to hear ideas on how we can help improve your clinic experience.https://t.co/7G2NefOgfZpic.twitter.com/DrH8gyG8CT
Fact #25: O.R.S.A. was the first Canadian Rett syndrome charity. There are now groups in B.C., Alberta, Saskatchewan, Manitoba and Quebec. We meet regularly to coordinate on national interests. pic.twitter.com/kap8kNMHyP
Fact #27: We have offered memberships since 1993. Sign up today for a free lifetime membership to stay fully connected and give us a stronger voice.https://t.co/emCREbj9m8pic.twitter.com/t3anekwb12
Fact #28: O.R.S.A. hosts bi-annual conferences that bring together families with researchers and medical professionals. While our 2020 conference was virtual, we look forward to gathering with our community in the future. pic.twitter.com/7jCntG4oxO
Fact #29: The first Rett clinic in Ontario was started by Dr. Peter Humphreys at CHEO in Ottawa in 2006 with the support of O.R.S.A. We continue to support the CHEO clinic along with 2 other clinics in the province. pic.twitter.com/BREz52WdSg
Our 30th Anniversary is officially here on July 26th. Stay tuned over the next 30 days as we share facts about O.R.S.A. past and present. pic.twitter.com/lM7oMe6zau
The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of two research grants totalling $78,750 from The Hope Fund for 2021. This is the second largest amount approved in a single year and with this release, The Hope Fund has funded over $600,000 in Canadian research to date.
O.R.S.A. has awarded $25,000 plus indirect costs to Dr. Alex Weber’s study entitled Functional, Metabolic, and Structural MRI Findings in Rett Syndrome. Dr Alex Weber is a newer researcher to the Canadian Rett syndrome field. He intends to study white matter differences between individuals with Rett syndrome and age-matched controls, and explore the associations between clinical severity and MRI findings, hoping that this may eventually lead to future targeted therapy. This is a pilot study which hopes to lead to further and larger grants through the Canadian Institute of Health Research.
O.R.S.A. has also awarded $50,000 to Dr Mojgan Rastegar’s study is entitled Targeting the molecular and structural abnormalities of brain cells for Rett Syndrome. She is a two-time past shared-award winner, and a very prominent Rett syndrome researcher in Canada who has shown passion, dedication, and persistence toward Rett syndrome research. Her study plans to explore whether the molecular and cellular changes in Rett syndrome brains affect the brain uniformly or are more region-specific, and to further explore the potential for a current existing drug (metformin) to play a rescue role at a cellular level. This was a well-reviewed research proposal from a well-established Canadian researcher.
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.
Dr. Alex Weber, as a neuroimaging scientist, applies non-invasive imaging techniques, such as magnetic resonance imaging, to help neuroscientists and clinicians better understand brain health, brain disorders, and potential treatments for brain disorders. His long-term goal is to develop specific and sensitive quantitative biomarkers of anatomical, functional and metabolic characteristics of brain health in newborns and children. Early recognition and classification combined with brain interventions are key in the prevention or reduction of progressive and chronic lifelong disabilities such as cerebral palsy, epilepsy, and behavioural and learning disorders. Currently, objective neuroimaging markers of treatment responses are urgently needed to accelerate clinical trials and focus our search for effective treatments. Over the past decade (four-year PhD, four-year postdoctoral fellow, and two years as an Assistant Professor), he has developed the expertise for a wide range of advanced MRI techniques, and made discoveries in brain health in newborns, children and youth. This work has been widely disseminated through publications, media interviews, presentations, clinical/radiology engagement, and open science avenues.
Dr. Mojgan Rastegar is a Professor of Biochemistry & Medical Genetics, at the University of Manitoba. Dr. Rastegar obtained a PhD degree in Biomedical Sciences from the Université Catholique de Louvain (UCL), Brussels, Belgium, and performed her postdoctoral trainings at the Hospital for Sick Children (Toronto, Canada), McGill University (Montreal, Canada), and Indiana University-Purdue University (Indianapolis, USA). Dr. Rastegar research program is focused on the molecular mechanisms that control brain development and their involvement in neurodevelopmental disorders including Rett Syndrome (RTT). To study RTT mechanism of disease, Dr. Rastegar laboratory uses a combination of murine and human in vivo and in vitro systems that includes primary neural stem cells, human brain cell lines, transgenic mice, and post-mortem human brain tissues. Dr. Rastegar has recently established the Human Rett Syndrome Brain Bio-Repository Laboratory in Manitoba, through the support of O.R.S.A. and private donations. This laboratory currently includes a cohort of male and female human brain tissues from RTT patients at different ages with age- and sex-matched non-RTT human control brains. An objective of Dr. Rastegar research program is to understand how molecular and cellular deficiencies in the human RTT brains lead to the associated disease phenotypes in patients. Her research program further seeks to determine what is commonly impacted amongst RTT patients and other RTT model systems. The outcome of her research studies is expected to identify novel therapeutic strategies for MeCP2-associated rare and common neurodevelopmental disorders that currently have no available cure.
Over the years, Dr. Rastegar’s research program has been supported by national, international, and local funding, and she has published over 50 peer-reviewed papers, 15 of them being on Rett Syndrome and MeCP2. Many of her trainees have been authors of these publications and her students have been successful in obtaining national scholarships including CIHR and NSERC studentships.
Dr. Rastegar is part of Board of Directors at the Canadian Society of Molecular Biosciences (CSMB). She is also an Editorial Board member of reputable journals such as Scientific Reports, Frontiers in Genetics, Neural Plasticity, Frontiers in Cell & Developmental Biology.
The Ontario Rett Syndrome Association (O.R.S.A.) is a volunteer, not-for-profit charity for parents, caregivers, researchers, medical professionals and other interested support agencies and individuals. O.R.S.A. became incorporated in 1991. Its Board of Directors is comprised of parents and caring citizens. Support is provided to families regionally. The association funds Canadian research projects, three Rett Syndrome Clinics, bi-annual conferences and developed the Canadian Rett Syndrome Registry. O.R.S.A. advocates to the needs of individuals with Rett syndrome and their families provincially and nationally.
Research Grant Application Program 2023-2024
Last Updated: 06/24/2023 by Bryan Higgins
The Program offers grants for the support of projects with amounts of up to $100,000 (two grants of $50,000 or one grant of $100,000) plus up to 10% indirect costs per year for a period of one year. Funds cannot be used to cover tuition costs.
Through this process, O.R.S.A. invites grant applications from professionals committed to conducting novel, emerging, or innovative research in areas relevant to the cure, cause, prevention, improved treatment and/or understanding of Rett syndrome and its implications on society. This program is provided to support current investigators and encourage new investigators to pursue research in Rett syndrome.
O.R.S.A. intends to provide awards to outstanding applicants who meet the eligibility criteria of the Program and who have been approved by its Research Grant Advisory Committee (the “Advisory Committee”). Further support is possible to existing funded projects by offering the option to renew funding upon the successful applicant’s re-application to the program.
Request for Applications for the Research Grant Program
Letter of Intent Form
Should you have any inquiries, please contact:
Rick Goodhew
O.R.S.A. Advisory Committee
Ontario Rett Syndrome Association
goodhew@rogers.com
Uncorked Rett is Back
Last Updated: 01/14/2022 by Steve
TREAT YOURSELF … AND SOMEONE ELSE TOO
For our second year in a row – Ontario Rett Syndrome Association has teamed up with Fielding Estate Winery with a hand selected packages great for the holidays. When you purchase any of the wine packages available, 25% will be donated back to Ontario Rett Syndrome Association. Delivery will be included throughout Ontario, but for other Provinces and Territories, accommodations can be made through Fielding Estate Winery.
Available Packages
Free Shipping within Ontario.
Shipping available outside of Ontario.
Free Shipping within Ontario.
Shipping available outside of Ontario.
When you click on the package you will be redirected to Fielding Estate Winery website to purchase your package. If you wish to order other items they carry or for all orders outside of Ontario the wine lodge is happy to assist you. Please call 1.888.778.7758 and reference our Rett fundraiser. Thank you for support.
Thank You Kevin
Posted: 10/31/2021 by Steve
As Rett syndrome Awareness Month draws to a close, let’s take the opportunity to say ‘thank you’ to Kevin Morton, past president. Thank you for the countless hours of volunteer time to coordinate, facilitate and keep O.R.S.A. true to its mission statement. Your dedication and forward direction over the years has been greatly appreciated by the O.R.S.A. board, families and friends but most of all those living with Rett Syndrome.
Thank you Kevin for making a difference.
Last Updated: 04/08/2022 by Bryan Higgins
ANAVEX2-73 Study Now Recruiting in Canada
Anavex Life Sciences Corp is recruiting patients for their study of ANAVEX2-73 in Rett syndrome patients in British Columbia Children’s Hospital in Vancouver and Alberta Children’s Hospital in Calgary. The study is the first ever clinical trial for Rett syndrome in the Canada.
This is a 12-week study of ANAVEX2-73, a liquid medication administered by mouth, for the treatment of patients with Rett syndrome between 5-17 years of age. The study is randomized, meaning 2 out of 3 participants will receive the study drug and 1 out of 3 will receive placebo. The placebo is an inactive liquid solution that looks and tastes just like the study medication but has no effects. The study involves 4 in-person visits at the clinical site, and 4 phone calls. Participants that complete the trial will be offered the option to enrol in a 48-week Open Label Extension, where all participants will receive the active study drug (not placebo). Study visits will include collection of blood and urine, ECGs (measures electrical activity of the heart), physical examinations and questionnaires completed by the patient’s caregiver. Travel expenses related to visits, such as flights, mileage and food, will be reimbursed by the study.
If you are interested in participating and would like to be added to the contact list please email, Sabrina Millson at smillson@rett.ca.
Include the following details in your email:
For more information on the study, including full inclusion and exclusion criteria, please visit ClinicalTrials.gov:
https://clinicaltrials.gov/ct2/show/NCT04304482
Posted: 09/27/2021 by Bryan Higgins
Taysha Community Updates – September 2021
Taysha Gene Therapies has shared the following updates from an educational event held this month with investors. Progress is continuing on TSHA-102, the investigational gene therapy for Rett syndrome. They plan to enroll patients 18 years or older for the first clinical trial.
September 22, 2021 Update
September 24, 2021 Update
Run4Rett – Virtual – October 2021
Last Updated: 11/13/2021 by Bryan Higgins
You’re invited to the virtual Run4Rett, taking place from October 1st to October 31st, 2021.
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 17th 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 – Closes October 31st
Download Pledge Sheet
2021 Annual General Meeting
Posted: 08/24/2021 by Bryan Higgins
Thursday, August 26th, 2021
8:00pm – 9:00pm
All are welcome to join.
Members have been sent a package with proxy forms via email.
Please join using this link:
https://us02web.zoom.us/j/85810662632?pwd=RSt0OWx5aXNvYm1kcGNyZ2pyaXpjZz09
AGENDA
Rett Syndrome Awareness Lawn Signs
Last Updated: 11/12/2021 by Steve
This year we are expanding our October Awareness Campaign with reusable lawn signs.
These signs are available free of charge to O.R.S.A. members, friends, and family who are interested.
Lawn signs are available on a first come first serve basis. As the number of signs are limited, you may order up to 5 per address for you and family and friends.
Help us spread awareness and build our social feed. Take a photo and #ORSASTRONG and tag Ontario Rett Syndrome Association.
We have currently reached our stock limit for this year. Thank you to everyone that will be participating.
O.R.S.A. Turns 30
Last Updated: 04/06/2022 by Bryan Higgins
The Ontario Rett Syndrome Association (O.R.S.A.) was incorporated on July 26, 1991. Launched from a small group of parents, the organization has grown tremendously over the past 30 years. O.R.S.A. funds 3 Rett syndrome clinics, has awarded over $600,000 in research grants, organizes educational events, runs the Canadian Rett Syndrome Registry and provides resources for families.
To celebrate this milestone, we have launched two podcasts!
Special 30th Anniversary Podcast
Listening To Hope
Listening To Hope celebrates recipients of grants from The Hope Fund. The first two episodes are available now. We will be releasing a new episode each Monday for the next 4 weeks.
2021 Hope Fund Grants
We have just announced our 2021 Hope Fund grant recipients. To date, over $600,000 in grants have been awarded.
Social Media
We have posted 30 facts about O.R.S.A. leading up to the 30th anniversary. Please subscribe to our social media channels to stay up to date!
https://www.facebook.com/OntarioRettSyndromeAssociation
https://www.instagram.com/ontrettsyndromeassociation/?hl=en
https://twitter.com/ontariorettsa?lang=en
2021 Hope Fund Grants Awarded
Last Updated: 04/06/2022 by Bryan Higgins
July 25, 2021
The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of two research grants totalling $78,750 from The Hope Fund for 2021. This is the second largest amount approved in a single year and with this release, The Hope Fund has funded over $600,000 in Canadian research to date.
O.R.S.A. has awarded $25,000 plus indirect costs to Dr. Alex Weber’s study entitled Functional, Metabolic, and Structural MRI Findings in Rett Syndrome. Dr Alex Weber is a newer researcher to the Canadian Rett syndrome field. He intends to study white matter differences between individuals with Rett syndrome and age-matched controls, and explore the associations between clinical severity and MRI findings, hoping that this may eventually lead to future targeted therapy. This is a pilot study which hopes to lead to further and larger grants through the Canadian Institute of Health Research.
O.R.S.A. has also awarded $50,000 to Dr Mojgan Rastegar’s study is entitled Targeting the molecular and structural abnormalities of brain cells for Rett Syndrome. She is a two-time past shared-award winner, and a very prominent Rett syndrome researcher in Canada who has shown passion, dedication, and persistence toward Rett syndrome research. Her study plans to explore whether the molecular and cellular changes in Rett syndrome brains affect the brain uniformly or are more region-specific, and to further explore the potential for a current existing drug (metformin) to play a rescue role at a cellular level. This was a well-reviewed research proposal from a well-established Canadian researcher.
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.
Dr. Alex Weber, as a neuroimaging scientist, applies non-invasive imaging techniques, such as magnetic resonance imaging, to help neuroscientists and clinicians better understand brain health, brain disorders, and potential treatments for brain disorders. His long-term goal is to develop specific and sensitive quantitative biomarkers of anatomical, functional and metabolic characteristics of brain health in newborns and children. Early recognition and classification combined with brain interventions are key in the prevention or reduction of progressive and chronic lifelong disabilities such as cerebral palsy, epilepsy, and behavioural and learning disorders. Currently, objective neuroimaging markers of treatment responses are urgently needed to accelerate clinical trials and focus our search for effective treatments. Over the past decade (four-year PhD, four-year postdoctoral fellow, and two years as an Assistant Professor), he has developed the expertise for a wide range of advanced MRI techniques, and made discoveries in brain health in newborns, children and youth. This work has been widely disseminated through publications, media interviews, presentations, clinical/radiology engagement, and open science avenues.
Dr. Mojgan Rastegar is a Professor of Biochemistry & Medical Genetics, at the University of Manitoba. Dr. Rastegar obtained a PhD degree in Biomedical Sciences from the Université Catholique de Louvain (UCL), Brussels, Belgium, and performed her postdoctoral trainings at the Hospital for Sick Children (Toronto, Canada), McGill University (Montreal, Canada), and Indiana University-Purdue University (Indianapolis, USA). Dr. Rastegar research program is focused on the molecular mechanisms that control brain development and their involvement in neurodevelopmental disorders including Rett Syndrome (RTT). To study RTT mechanism of disease, Dr. Rastegar laboratory uses a combination of murine and human in vivo and in vitro systems that includes primary neural stem cells, human brain cell lines, transgenic mice, and post-mortem human brain tissues. Dr. Rastegar has recently established the Human Rett Syndrome Brain Bio-Repository Laboratory in Manitoba, through the support of O.R.S.A. and private donations. This laboratory currently includes a cohort of male and female human brain tissues from RTT patients at different ages with age- and sex-matched non-RTT human control brains. An objective of Dr. Rastegar research program is to understand how molecular and cellular deficiencies in the human RTT brains lead to the associated disease phenotypes in patients. Her research program further seeks to determine what is commonly impacted amongst RTT patients and other RTT model systems. The outcome of her research studies is expected to identify novel therapeutic strategies for MeCP2-associated rare and common neurodevelopmental disorders that currently have no available cure.
Over the years, Dr. Rastegar’s research program has been supported by national, international, and local funding, and she has published over 50 peer-reviewed papers, 15 of them being on Rett Syndrome and MeCP2. Many of her trainees have been authors of these publications and her students have been successful in obtaining national scholarships including CIHR and NSERC studentships.
Dr. Rastegar is part of Board of Directors at the Canadian Society of Molecular Biosciences (CSMB). She is also an Editorial Board member of reputable journals such as Scientific Reports, Frontiers in Genetics, Neural Plasticity, Frontiers in Cell & Developmental Biology.
The Ontario Rett Syndrome Association (O.R.S.A.) is a volunteer, not-for-profit charity for parents, caregivers, researchers, medical professionals and other interested support agencies and individuals. O.R.S.A. became incorporated in 1991. Its Board of Directors is comprised of parents and caring citizens. Support is provided to families regionally. The association funds Canadian research projects, three Rett Syndrome Clinics, bi-annual conferences and developed the Canadian Rett Syndrome Registry. O.R.S.A. advocates to the needs of individuals with Rett syndrome and their families provincially and nationally.