About Us

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Who we are

The Manitoba Rett Syndrome Association (MRSA) is a registered charity established by volunteers who have been affected by Rett syndrome. The Board of Directors consists of parents, caregivers, family members, support staff, and physicians. MRSA offers assistance to new parents in Manitoba by supplying them with parent/caregiver information packages and linking them with other local families. Continuous support is provided through a website, email communication, and family outings.

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Our Mission

MRSA’s main mission is to create awareness and improve understanding of Rett syndrome and to advocate for the needs of individuals with Rett syndrome and their families. We support parents, caregivers, researchers, medical professionals and other interested support agencies and individuals that are interested or already involved in furthering the management of Rett syndrome within Manitoba.

Our History

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MRSA was formed by three families in 1990. Rett syndrome had just been newly diagnosed and information about the disease was very limited and not very promising. Dr. Patrick McLeod, a pediatric geneticist who was researching Rett syndrome at the time, held a diagnostic clinic in Winnipeg. All three of their girls were diagnosed at that clinic. The diagnosis changed their lives forever.

And as a result, these three families began searching for as much information and help as they could find. By doing so, the three Manitoba families ended up connecting at a conference in Saskatoon, which was hosted by the Saskatchewan Rett Syndrome Association. With the help of family and friends, this dedicated group of parents (MRSA) worked hard to raise awareness of Rett syndrome in Manitoba. They developed and distributed brochures, conducted newspaper & TV interviews, held conferences and started the Manitoba Rett Syndrome Association and its website.

Their fundraising efforts provided services to improve the lives of children with Rett syndrome in the community. They provided services such as music therapy, modified school programs and a variety of recreation/therapeutic equipment for the girls. These families continued to participate in conferences in Canada and the USA so that they could provide the most up to date information to their daughter's teachers, educational assistants, therapists and doctors in Manitoba. They worked in conjunction with organizations like the International Rett Syndrome Association (Rettsyndrome.org) and the Ontario Rett Syndrome Association to help raise awareness world-wide.

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Board of Directors

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  • President Trish became involved with the Manitoba Rett Syndrome Association after her youngest daughter, Ema, received a diagnosis. She has dedicated over 11 years to volunteering with the organization. Trish is actively engaged in the community, advocating for and supporting other families impacted by Rett syndrome and those who utilize Augmentative and Alternative Communication (AAC).In her free time, she volunteers on various boards. This includes serving as a board member for the RCC/SSCY Family Advisory Committee, the MB Children’s Emergency Advisory Council, and taking on the role of Vice Chair at the Open Access Resource Centre. Additionally, she co-facilitates the Powerful Tools for Caregivers program and is currently involved with two research projects. Trish and her husband are proud parents of five children and four st.Bernards and reside in Oak Bluff, Manitoba.

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  • Treasurer

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  • Vice President

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  • Medical Consultant

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  • Kathy is one of the founding members of the Manitoba Rett Syndrome Association. Her daughter, Jody, was born on October 24, 1979, during a time when little was known about Rett Syndrome. Dr. Patrick MacLeod visited Winnipeg and quickly diagnosed her daughter. Although they waited years for this information, the future remained uncertain, and available knowledge was rather grim. Kathy, along with two other families and numerous extended relatives and friends, established the Manitoba Rett Syndrome Association in 1990. The M.R.S.A. mission focused on sharing information to support families and the medical community. They organized fundraisers to distribute materials, provided music therapy, and hosted events such as the walk at King's Park, along with a well-attended conference attended by families from other provinces. Kathy still plays a role in the Manitoba Rett Syndrome Association, albeit a much smaller one. Even though her active participation has decreased, her influence continues to be significant. The organization often draws on her vast experience to make strategic decisions and advocacy initiatives.

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  • Medical Consultant (Research)

Getting Involved

Together, we can change lives. Partner with the Manitoba Rett Syndrome Association to help raise awareness and open the doors to treating Rett Syndrome and other neurological disorders. By coming together, we can contribute to advancements in treatment and ultimately, find a cure.

There are many ways to get involved and help make a difference.  

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Join us at Family Events

Family gatherings aim to strengthen family bonds, creating a feeling of togetherness and unity.

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Donate

Kindly consider supporting the Manitoba Rett Syndrome Association through donations. Tax receipts will be issued for donations totaling $20 or more. You can donate online.

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Advocate

Together, we can unite our voices to ensure that nobody navigates this path alone and that every individual affected by Rett Syndrome has access to the necessary resources and hope.

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Volunteer

Your Time Can Make a Difference!

At the Manitoba Rett Syndrome Association, volunteers are at the heart of everything we do. As a volunteer-driven charity, we rely on people who generously share their time, skills, and ideas to help us raise awareness, support families, and move our organization forward.

There are many ways to get involved, and we're currently looking for volunteers to help with:

  • Grant Research & Writing – Finding funding opportunities and preparing grant applications.

  • Financial Planning – Assisting with budgets, financial planning, and organizational sustainability.

  • Strategic Planning – Helping develop plans and initiatives to guide our future.

  • Communications & Resource Development – Creating and updating brochures, educational resources, and information packages for physicians, pediatricians, and families.

  • Fundraising & Events – Helping organize community events, fundraising activities, and awareness campaigns.

  • Government & Community Outreach – Helping us build relationships, raise awareness, and improve access to services and supports.

Everyone Has Something to Offer!

You don't need a personal connection to Rett syndrome to volunteer with us. Whether you're a student, a working professional, retired, or simply someone looking to give back, we'd love to hear from you.

Some opportunities involve individual projects, while others may be ongoing. We understand that everyone's availability is different.

Have a skill or idea that isn't listed? We're always open to new volunteers and new ideas!

Interested in Volunteering?

We'd love to learn more about you and how you'd like to get involved.

Complete Our Volunteer Interest Form

Together, we can make a difference for individuals living with Rett syndrome and their families.

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Raise Awareness

Sharing information on social media, participating in fundraising events, and supporting research initiatives are all impactful actions. 

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Fundraise

Hold an event to bring the community together and support a worthy cause. Consider organizing a charity auction, a themed dinner, or even a fun run. These events not only raise money but also raise awareness about the cause you're passionate about. 

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Join the Mailing List

Stay updated on Manitoba events, simply join the email list to receive information about various programs and activities. Whether it's community events, educational workshops, or recreational activities, being on the mailing list will keep you informed.