Last Updated: 01/21/2025 by Steve
Health Canada Approves Daybue!
Acadia Pharmaceuticals Announces Health Canada Approval of DAYBUE (trofinetide) for the Treatment of Rett Syndrome.
DAYBUE is the first and only therapy approved in Canada for the treatment of Rett syndrome, a rare neurodevelopmental disorder. We recognize the incredible sacrifices made by individuals with Rett syndrome and their families who participated in the clinical trials. Thanks to their courage, along with the dedication and perseverance of Acadia Pharmaceuticals, we have reached a pivotal milestone for Canadian families. We are grateful to everyone involved in making this treatment a reality today.
Consult your healthcare provider to learn more and determine if Daybue is suitable for your loved one. Your family doctor, pediatrician, Rett syndrome specialist, or neurologist can assist with enrollment by visiting www.acadiaconnect.com.
Click Here for Official Press Release
20th Annual Run4Rett
Last Updated: 11/19/2024 by Steve
20th Annual RUN4RETT was Energized!
September weather can be very temperamental, but not this year. Overcast day kept the heat at bay. Not a drop of rain. As they say, “If You Invite Them They Will Come!” The families and friends, connected to a loved one with Rett syndrome never disappoint. It is a day of hugs, tears, more hugs, brainstorming, and new friendships, old ones rekindled, raising awareness for Rett syndrome and funds for the Ontario Rett Syndrome Association.
In attendance at the 20th were some of the past race coordinators/directors. The first run brought to life by Abby Congram’s Aunt, Judy Boivan. The Congram family created this signature event in 2005 and has been in attendance since. Abby has many family and friends supporting the team every year and this year was no exception. Who would know that the event would still be going strong 20 years later? Next the Harris Family held the reins and they were not in attendance this year. Following the Harris’s were the Polon’s. The Polon’s were on route for the 20th bringing their family along. There was one year where the run was managed by an event planner. The following year, 2012, the task was taken over by The Lawrence family. We have been coordinating the event since. Over the years there has been family and friends attend, donate, walk/run and volunteer at the event, mostly all of the above. The years have blended into each other and it is now 2024. Our daughter is 33 years young. It has been a kaleidoscope of medical learning, trial and error and hope. There however is one thing that always brings new energy, life, renewed perseverance and hope. Watching families and their loved one with RS, participate in the RUN4RETT. Year after year the event attracts new families, new friends, new energy and new hope.
Thank you to all of the families and friends for participating in the run. Thank you to our donors that provide many items to the silent auction each year. Especially to Mark Swartz and James Dodds for always being the main donors to the auction. To the many volunteers that have been with us for a few years, we couldn’t do it without you all. Thank you Valerie & Barry for all the work you do behind the scene, I appreciate you both. Thank you ORSA board members, for always giving more hours of your time for families living with RS. Thank you ORSA for bringing together a community for those living with Rett syndrome. Two things that are present every year, we are stronger together and together we are building healthy tomorrows!
Thank you everyone, see you next year!
Sherry Lawrence
ORSA Board Member & Race Organizer 2024
Social Media Frame Maker
Last Updated: 10/29/2024 by Steve
Light Canada Purple Submissions
Last Updated: 11/19/2024 by Steve
We would love to see your photos of iconic locations or local supporters that were lit purple for Rett Syndrome.
DAYBUE – Breaking News
Last Updated: 01/21/2025 by Steve
Health Canada Approves Daybue!
Acadia Pharmaceuticals Announces Health Canada Approval of DAYBUE (trofinetide) for the Treatment of Rett Syndrome.
DAYBUE is the first and only therapy approved in Canada for the treatment of Rett syndrome, a rare neurodevelopmental disorder. We recognize the incredible sacrifices made by individuals with Rett syndrome and their families who participated in the clinical trials. Thanks to their courage, along with the dedication and perseverance of Acadia Pharmaceuticals, we have reached a pivotal milestone for Canadian families. We are grateful to everyone involved in making this treatment a reality today.
Consult your healthcare provider to learn more and determine if Daybue is suitable for your loved one. Your family doctor, pediatrician, Rett syndrome specialist, or neurologist can assist with enrollment by visiting www.acadiaconnect.com.
Click Here for Official Press Release
Last Updated: 01/23/2025 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. ORSA 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 ORSA website. The website is a working document and is routinely being refreshed and updated.
Scientific
Over the past year we were able to
Outreach
2025 Calendars
Last Updated: 11/20/2024 by Steve
Order your Copy Today!
We are beyond excited to share the 2025 ORSA Calendar, where art, resilience, and community come together form coast to coast in the most beautiful way! Created by individuals with Rett syndrome and their amazing families, this calendar is more than just a visual treat—it’s a celebration of hope, strength, and the incredible journey we’re all on together.
We are also please to announce this year’s calendar sponsor Acadia Pharmaceuticals Canada Inc.
Order Options
No Longer Available
Run4Rett Pick-Up
As we always love to see you in person, we will be offering to hand deliver your calendar in person at the Run4Rett.
Sunday, September 22nd, 2024
RICHVALE COMMUNITY CENTRE, 160 Avenue Road, Richmond Hill, ON
We will be available from 10:30am – 12:30pm
Delivery
If you are unable to pick up we would be happy to mail them to your address.
To avoid bending we ask you don’t use a P.O. Box.
Deliveries will start to ship in October 2024
Hope Fund Research Update
Last Updated: 11/19/2024 by Steve
Gordillo-Sampedro-MolCellNeurosci-2024
Annual General Meeting – Registration
Last Updated: 08/06/2024 by Steve
Taysha Rett Program Update
Last Updated: 11/19/2024 by Steve
Code of Conduct
Last Updated: 07/22/2024 by Steve