New and improved website to be released to ORSA community members in the near future – currently finalizing
Improved use of social media and e-blasts to members
Successful representation nationally for Rett Awareness Month in October with #LightCanadaPurple
Positive feedback from families about the new awareness kit activities
Annual calendar with artwork from ORSA community members in 2023 was a huge success, and in 2024 we are finalizing the next calendar to be released
Applications are in place to implement future video campaigns
Fundraising
The following fundrasiers were held:
ORSA Signature Events:
Run4Rett 2023
Annual ORSA Calendar 2023
19th Annual Rett Classic 2024
3rd Party Events:
Ref4Rett – hosted by the Morton family
Revs4Rett August 2023 – hosted annually by the Millson family
“36 Exposures” October 2023 – hosted annually by Michelle Quance
AdBands May 2024 – hosted annually by Michelle Quance
Upcoming ORSA events:
Run4Rett 2024 taking place in-person on Sunday, September 22nd, 2024 at the Richvale Community Center, Richmond Hill
20th Annual Rett Classic is tentatively scheduled for Sunday, June 8th, 2025
Education
In May, FLASH (Family Literacy and AAC on the Shores of Huron) Camp was held in Southwestern Ontario at the fully accessible Camp Kintail. Four dynamic professionals spearheaded and planned the camp, teaching literacy and communication skills to individuals who use augmentative and alternative communication (AAC), alongside their families and support workers. O.R.S.A. provided funds again for the 2nd year, administration support to process grants and camper fees, as well as liaison & planning time from one of our Board members. The Camp is booked to run again in 2025, stay tuned for details.
A caregiver conference, “Stronger Together”, was held in Ottawa, October 21-22, 2023 sponsored by Taysha Gene Therapies, Acadia Pharmaceuticals, and Anavex life sciences. It was a wonderful opportunity for families to gather, learn and talk to medical professionals and industry leaders.
Ongoing Activities:
Resources, education material and tools can be found on the O.R.S.A. website. The website is a working document and is routinely being refreshed and updated.
Scientific
Over the past year we were able to
Attend IRSF scientific conference and Ascend caregiver conference
Assisted Anavex Life Sciences with patient advocacy
Worked with Acadia Pharmaceuticals to assist with providing information on gaining access to Daybue in Canada.
Submitted a CADTH application on behalf of all Canadian Associations
Updated security measures and access to the Canadian Rett Syndrome Registry
Assist Taysha Gene Therapies with activating a pediatric gene therapy program in Montreal
From the research hope fund, we issued 2 large grants totaling 100, 000 to Canadian researchers Dr. Wright Dr. LeRouex and Dr. Rossignol
Outreach
Appointed a new outreach coordinator, Amy Whittard
Continued to contact new families when they sign up for lifetime membership
Answered approx. 20-28 emails as well as voice mails related to new family’s reaching out for information, and follow-up questions to existing ORSA members
Last Updated: 10/15/2024 by Steve
2023-24 AGM Committee Reports
Annual General Meeting
Highlights from Committee Reports
August 2023-Sept 2024
Communications
Fundraising
The following fundrasiers were held:
ORSA Signature Events:
3rd Party Events:
Upcoming ORSA events:
Education
In May, FLASH (Family Literacy and AAC on the Shores of Huron) Camp was held in Southwestern Ontario at the fully accessible Camp Kintail. Four dynamic professionals spearheaded and planned the camp, teaching literacy and communication skills to individuals who use augmentative and alternative communication (AAC), alongside their families and support workers. O.R.S.A. provided funds again for the 2nd year, administration support to process grants and camper fees, as well as liaison & planning time from one of our Board members. The Camp is booked to run again in 2025, stay tuned for details.
A caregiver conference, “Stronger Together”, was held in Ottawa, October 21-22, 2023 sponsored by Taysha Gene Therapies, Acadia Pharmaceuticals, and Anavex life sciences. It was a wonderful opportunity for families to gather, learn and talk to medical professionals and industry leaders.
Ongoing Activities:
Resources, education material and tools can be found on the O.R.S.A. website. The website is a working document and is routinely being refreshed and updated.
Scientific
Over the past year we were able to
Outreach
Category: AGM, News, What's Going On