Adrienne Chase is a realtor with two daughters. She was diagnosed with Relapsing-Remitting MS in 2017. Her connection to MS goes a bit deeper, as her older brother was diagnosed with Primary Progressive MS in 2001. She has volunteered with the MS Society over the last several years with the MS Walk, Peer 1:1 Support Program and the One Call MS support team.
Adrienne enjoys researching medical data on MS treatments and is passionate about nutrition, health, and exercise. She hopes to gain more in-depth knowledge on up-and-coming MS research by participating in the research review process.
Over the past 15 years, Beatrice Povolo has been focused on patient advocacy with a small national not-for-profit organization based in Toronto. Through this work, she gained extensive experience in working collaboratively with clinicians and researchers, government and industry representatives on initiatives to help improve the overall patient experience. Beatrice was diagnosed with MS when she was 39 years old and was determined to find out everything she could about effectively managing her condition and turned to the MS Society for credible information and resources. Over the past few years, she has also participated in local MS Walks with her friends and family, as a way to help raise awareness for this important cause.
Beatrice believes that research is such an integral part of providing hope to MS patients across the country. With each new innovation in therapies or treatments, she gains new hope in one day finding a cure for this disease. By taking part in the research review process, Beatrice feels that she can contribute to helping identify areas of research that would best benefit those living with MS and represent the community by sharing her lived experience.
Carl Scheck is a recently retired IT management professional whose career has touched many technologies from main frame to micro computer hardware and software. He was diagnosed with primary progressive MS not a year after his retirement. He has since read and followed the guidance of the MS Society’s publications and other sources in attempts to minimize the effects and progression of the disease.
When Carl read about the MS Society’s Community Representative Program, he took interest instantly. Working along side actual scientific reviewers in helping to determine the course of MS research appeals to both his professional background and the desire to see progress in the treatment and eradication of MS. His hope as a Community Representative participant is to effectively contribute to the larger cause of making MS a thing of the past.
Christine Neff is an active volunteer as a Board Member and Chair of the Governance Committee with Trellis, a Calgary base social service agency and sitting on two statutory committees with the provincial engineering association. She works as a consultant in Project Governance and is a Professional Engineer in Alberta. She was diagnosed with MS in 1999.
She was inspired to get involved with the MS Society as it does such valuable work both in supporting those living with MS and in research on all aspects of the disease management, treatment and ultimately a cure. Christine is very excited about the opportunity to contribute to the selection of the most promising research ideas by bringing the perspective of those living with MS to the review process.
Dorothyanne Brown is a writer, retired nurse, and health policy analyst with a background in epidemiology. She had to retire from work at age 50 due to her MS. Since retirement Dorothyanne has been involved with the MS Society on several levels from serving on the Board in Ottawa to running a support group in Dartmouth, NS, volunteering at the MS walk many times, and training for the peer-to-peer support program.
Dorothyanne chose to volunteer with the MS Society because of her interest in the disease and close work with the Society in the past. Dorothyanne believes good work is being done by many good people, and she hopes to be able to assist them in some small way. With her background in research and health care, she’s hoping to provide some knowledgeable commentary on what research seems important to people with MS. As someone with the lived experience of 13 years since diagnosis, she hopes she can provide some insight to where research is needed.
When Geoff Robinson was diagnosed almost eight years ago with RRMS, he describes it like a bolt of lightening that came out of the blue. Like many people with MS, the diagnosis explained many issues he had been having for a long time. Having spent 20 years as a healthcare research consultant he immediately threw himself into learning as much as he could about the condition once he was diagnosed. In the subsequent years he became involved in attending an amazing support group in his area, sitting on information panels for the newly diagnosed, being a volunteer with the MS Society of Canada’s 1:1 Peer Support Program from the initial stages and over the years have had some truly enriching peer partnerships., He has also been part of the OneCall stream of peer delivered support for individuals who have more targeted questions related to MS.
Geoff has always believed that the basis of understanding MS is research and exploration, thus being a community representative, able to provide feedback on how the considered research programs will influence the day-to-day life of MS patients, and what the outcomes of the research might mean to people living with MS, is an important role. He hopes to be able to aid in moving the yard stick of MS management forward by helping to bring together the passion and brilliance of those in the research community together with the shared experience of those who are living with MS.
Jocelyne Arcand has been involved as a volunteer with the Quebec Division of the MS Society and the Montérégie Chapter for several years. She believes it is important to support and give hope to newly diagnosed persons. MS is not always severe. Jocelyne was diagnosed with MS in 1987 and she still plays golf! She strongly believes that changed nutrition and life habits made a significant difference in the evolution of the disease.
Canada has a high rate of multiple sclerosis, and it is the leader in MS research. We need research to understand the mechanisms that can slow down and perhaps stop the progression of MS. We need to understand the cause of MS to be able to develop a cure. Knowledge is the key for managing the disease and research is the best way to get access to that knowledge. Being a member of a research review committee is a great opportunity to learn more about MS and to share experience and ideas that may influence current and future research. It is a good way to connect research priorities with the experience and interests of people who live with MS.
Diagnosed with MS in 2004 and an extremely active MS Society volunteer, Julia is currently the Library Director of the Fredericton Public Library in New Brunswick. With her diagnosis and curious nature, Julia wanted to know everything and anything about the disease including how to change government policies and inspire change to help others live better with MS.
Julia believes that research at its core is the investigative process to help discover new ideas, begin conversations and discovery. It is imperative that research in the field of MS include the voices of those who live and battle this disease.
Multiple Sclerosis has been a significant part of Katalin Koller’s life since a very young age, shaping her family dynamic, who she is, and how she sees the world. Now in her mid-thirties, Katalin resides with and provides care for her mother, Ann, in New Brunswick, as she perseveres through the progressive phase of her MS. Gratefully, running Earthonomic Community Consulting allows her to work from home, while also completing her PhD in the geography of societal change program at Carleton University.
As an activist-scholar, she hopes to share her research skills and lived experiences as a caregiver to support the search for knowledge and understanding that improves the lives of those affected by MS.
Kevin Ethier was diagnosed with MS at the age of 28. Since his diagnosis, he has tried to raise awareness of MS in Canada and to positively influence people’s perceptions about what it means to live with the disease. Kevin has participated in MS Bike for more than 10 years, supported by his amazing team (Handlebar MS-taches). He has also participated in several MS Walk events.
Kevin believes that scientific research plays an important role in providing the knowledge and expertise needed to improve the quality of life of those living with MS. Because of this, he believes it’s important that decisions about scientific research are made with strong consideration of the social, economic, and cultural impacts of that research on the MS community. Kevin hopes to provide a voice for those living with MS who stand to be directly impacted by this important research.
Melissa Le was diagnosed with RRMS three years ago, when she was 21 years old. The diagnosis marked a profound change in her life, one that altered her outlook completely. In the months after Melissa’s diagnosis, she sought many resources to try to better understand living with MS - one resource that was checked regularly was the MS Society of Canada’s website. Whether she had questions on how to deal with debilitating fatigue and brain fog, or if she was just curious about the latest research on her treatment drug - she could usually find the answers here. Having knowledge and relevant information on some facets of living with MS had a very positive impact on her adjustment.
With a background in health sciences, Melissa is familiar with accessing and understanding the research being published in the field. As a voice of the MS community, she strives to directly bridge the research to those directly impacted by the work and highlight the importance of science communication and literacy. Melissa believes it is empowering to be able to foster a bi-directional relationship.
Sue Whittaker is a retired teacher living in the Cowichan Valley on Vancouver Island. Her relationship with the MS Society began in 1997, a year after her diagnosis, when she participated in her first MS Bike event. The support from her community and the people at that first ride inspired her to become a volunteer with the MS Society. Over the years Sue delivered disability awareness presentations to introduce the Read-A-Thon program to school children, shared her story to service clubs, high school leadership groups and nursing classes, assisted with the carnation campaign, been a Check-in Coordinator for the Duncan MS Walk and, as an ambassador, supported Burgers to Beat MS activities at local A&W restaurants. During the pandemic, Sue also made welcome and thank you phone calls to event participants and donors. Volunteering helps her feel proactive about her MS health and allows her to increase the community’s awareness of the challenges of living with MS.
Living with MS for a great many years has always made Sue passionate about research that looks to find disease modifying therapies for those in this group, but as she is moving beyond middle age Sue is also eager to see research that looks at aging with MS and ways to protect neuron health so that people living with MS can live the healthiest senior years possible. She is excited to be a community voice in the research review process and is looking forward to making new connections with people in the MS community.
Yuri is a non-profit communications and advocacy professional from Vancouver, BC. He was diagnosed with MS in 2019. In addition to his role as a Community Representative, he also serves as a peer support group leader for the MS Society of Canada.
Yuri is inspired to volunteer as a way to give back to an organization that provides important advocacy, resources, and support to those living with MS in Canada. He hopes his own experiences, and connections to others with MS, provides a community-focused approach to future research in our country.