About Us
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.
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
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.
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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Cathy 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 our daughter . Although they waited years for this information, the future remained uncertain, and available knowledge was rather grim. Cathy, along with two other families and numerous extended relatives and friends, established the Manitoba Rett Syndrome Association. 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. Cathy 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.
Join us at Family Events
Family gatherings aim to strengthen family bonds, creating a feeling of togetherness and unity.
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.
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.
Volunteer
Join the M.R.S.A board - The Manitoba Rett Syndrome Association represents a dynamic network of volunteers committed to M.R.S.A. This isn't just about giving back – it's a chance to grow gratitude, broaden horizons, and bond with folks who share the same journey. Regardless of age or interests, whether you are a young adult or grandparent, your unique qualities have the power to uplift those around you.
Embrace a variety of volunteer opportunities that arise from time to time. Manitoba Rett Syndrome Association relies on volunteers to support the Rett board. Volunteering offers a chance to give back, gain skills, and meet people. No matter your expertise, our team is eager to learn more about your unique skills and how they can contribute to our shared goals. Whether you capture moments through the lens, bring visions to life with your illustrations, or provide invaluable support as a Speech-Language Pathologist, your talents are invaluable. Each role brings a distinct perspective and set of abilities that can enhance our collaborative efforts. Please share more about what drives your passion and how you envision your contributions making a difference. Together, we can create something truly extraordinary. Join to make a difference by emailing info@rettsyndrome.mb.ca.
Raise Awareness
Sharing information on social media, participating in fundraising events, and supporting research initiatives are all impactful actions.
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.
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.