CMTA Patient & Research Summitsummit4dm1n2023-12-01T19:03:20+00:00
The 2024 CMTA Patient & Research Summit will take place on Saturday, September 7th and Sunday, September 8th. It will offer life-improving presentations on living well with CMT and will provide a comprehensive update on STAR research. Spend the weekend learning how to manage CMT and hear what you can do to be involved in advancing CMT research through clinical trials and studies.
The CMTA is thrilled to announce that Victoria Berezovich will be the keynote speaker at the 2023 Patient & Research Summit in Boston on Nov. 4, Victoria is a remarkable individual whose journey with Charcot-Marie-Tooth disease (CMT) began with a challenging diagnosis and led to her becoming a passionate advocate and leader in the CMT community. Her inspiring story of resilience and determination serves as a beacon of hope for those facing similar challenges. Join us in Boston to meet this extraordinary advocate and learn from her experiences.
Victoria’s CMT journey began with early onset scoliosis, which manifested when she was just 12 years old and required two spinal fusions and reconstructive surgery on her ribs at the age of 18. Her diagnostic journey was fraught with challenges, including limited testing options in Canada, but she courageously stood up against political obstacles to secure the necessary testing. It confirmed her CMT type 4C when she was in her late 20s.
Her journey with CMT took an unexpected turn when she had an unruptured brain aneurysm, requiring brain surgery. This event marked a turning point in her life, prompting her to leave her full-time job and focus on her health. Through the early years of her journey, she yearned for a supportive community but found limited resources and understanding from medical professionals. This longing for a community of CMT warriors was a driving force behind her advocacy efforts.
Despite facing numerous challenges and health setbacks, Victoria’s determination led her to volunteer to lead the CMTA’s Edmonton, Canada branch. She connected with fellow CMT warriors and fostered a sense of belonging within the community. Her journey also intersected with the “Wheelie Peeps,” a group associated with spinal cord injury in Alberta, which further expanded her network of supporters. This journey eventually led her to become a model of neurodiversity with Kello Inclusive, a talent agency promoting diverse, disabled and visibly different talent, including young children with CMT.
Victoria’s advocacy took a more public turn when she became one of the stars of the CBC docu-series “Push,” which offers viewers an intimate look into the lives of individuals with physical disabilities. The show, available to stream on CBC GEM in Canada, highlights a diverse group of people living with disabilities, including members of the “Wheelie Peeps.” Through her participation in “Push,” Victoria aims to break stereotypes, push boundaries, and promote acceptance and knowledge about disabilities. The second season of Push, of which Victoria is a returning cast member, is set to premiere in early 2024.
Victoria emphasizes the importance of finding a supportive tribe. Her advice to newly diagnosed individuals is to seek out fellow warriors, lean on each other and know that they are not alone. She also emphasizes the importance of living a healthy, stress-free life and maintaining physical and mental well-being.
Victoria’s story is an inspiring testament to the power of determination and community. Her advocacy work has made a significant impact in the CMT community, and she has become a symbol of resilience. Join us in Boston to celebrate her accomplishments and to continue building a supportive and empowered CMT community.
For a deeper dive into Victoria’s incredible journey, we invite you to listen to her episode on the CMT 4 Me podcast. In this episode, Victoria shares her experiences, challenges, and triumphs, offering a more profound insight into her remarkable story. You can find the podcast episode here.
What People Have to Say
Some kind words about our Summit
Thank you CMTA for the annual Patient & Family Conferences! It’s wonderful to be able to learn about CMT directly from top experts in the field and to be able to ask them questions. I especially appreciated the 2021 Conference as it was virtual, allowing participants to move around easily from topic to topic from the comfort of home. For those who couldn’t attend, the videos were later posted on CMTA’s website, which is a very helpful resource. Thank you very much!
Angela Graham Founder, CMTUS on Facebook
Last year’s November 2021’s virtual CMTA Patient/Family conference provided incredible multidisciplinary content. The platform’s versatility, speaker’s expertise, and friendly CMTA staff moderators were all extremely impressive and effective. I especially appreciated the ability to watch webinars/talks on demand, following the conference, since the conference began very early for people on the west coast. Additionally, I relished the ability to rewatch a presentation with difficult subject matter or just tosolidify the information.
Lisa Weiner CMTA Community Member
The CMTA Patient/Family Conference which was virtual in 2021 was a wonderful experience to be involved in. Having CMT1a I appreciated the variety of topics and speakers and also for the networking it afforded you as a conference goer. I look forward to seeing what is offered in 2022 and beyond.
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