The Huntington Society of Canada (HSC) is a not-for-profit charitable organization that raises funds to deliver individual and group counselling services to support individuals and families living with Huntington disease (HD) and to fund medical research to delay or stop the progression of the disease. It’s a strong group from coast to coast, sharing in the journey of living with a hereditary, neurodegenerative disease that impacts families, friends and caregivers. HSC aims to help maximize the quality of life of people living with HD by:
- Delivering services to support individuals and families
- Increasing awareness to help others better understand the disease
- Funding research to slow the progression of the disease and to prevent HD
We are excited to bring our biennial conference into the homes of our communities as we make the necessary shift to a virtual setting, offered at no cost to attendees.
Our postponed 2020 National Conference in Niagara was set to be our most extensive conference yet - all 350 available spots were claimed and excitement was building. Now, eliminating geographic and financial barriers has allowed us to connect with a larger audience than ever before, with the added bonus of no travel hassles.
This event gives the HD community an opportunity to connect, learn and grow through this time of isolation. We’re committed to exceeding expectations with the interactive experience and continuing to share experiences.
- Please sign up for the free Virtual National Conference here: https://inevent.com/en/HuntingtonSocietyofCanada/HSCVirtualNationalConference/form.php
- Absolutely! Please share this link with them so that they can sign up: https://inevent.com/en/HuntingtonSocietyofCanada/HSCVirtualNationalConference/form.php
- If you can’t attend the day of the conference, please sign up regardless to receive access to the recordings of the presentations (attendees will not be filmed or recorded in any way). This is the link the sign up: https://inevent.com/en/HuntingtonSocietyofCanada/HSCVirtualNationalConference/form.php
- You will receive a link to the Virtual National Conference site a week before the conference date of March 27. This email will also contain helpful hints for logging in and accessing session and other conference features.
- Email us at events@huntingtonsociety.ca and we can help troubleshoot.
- All speaker sessions will be recorded and viewable on the inevent platform, which is the program that will host the Virtual National Conference. It is user-friendly and has many great features to use to make the experience interactive and rewarding.
- The Keynote Address by Chris Koch will be available on the inevent platform exclusively for two weeks following the conference. All other speaker sessions will be available on the inevent site and will also be uploaded to our website and YouTube channel for viewing at your leisure. Only the presenters are filmed; no attendees will be recorded.
- Social sessions will not be recorded
- There will be handouts available for some sessions. They can be downloaded during the sessions under the “file tab” on the inevent interface.
- When you register for the conference you have the option to be visible to other attendees or not. If you would like to remain private and not engage in networking, you can change this setting.
- The conference is free for all to attend! If you would like to support the Huntington Society by making a donation, you are free to do so, but it is not required.
- You will need Wifi or a plugged in internet connection
- You can use a desktop or laptop computer with working audio, or a tablet/iPad or smartphone. Headphones are an option.
- If you would like to join the social sessions with the video chat function, you’ll also need a web cam and working microphone (most computers have one built-in). You can also join the social session as a viewer and use the chat bar if you prefer not to join with video and audio enabled.
- All of the sessions will be recorded, so you can attend one and watch the others at a later time.
Bev Heim-Myers
Currently, Bev is the Chair of the Canadian Coalition for Genetic Fairness and has worked with key stakeholders to see the Genetic Non-Discrimination Act (GNDA) passed into law in 2017 (and upheld by the Supreme Court of Canada July, 2020), ensuring that the genetic test information of all Canadians is protected. Bev remains an active member of the Governing Council of the Neurological Health Charities of Canada (NHCC) and serves as a director on the boards of Clinical Trials Ontario (CTO) and Dying With Dignity Canada (DWDC).
Bev joined the Huntington Society of Canada in 2010 as Chief Executive Officer and retired from that position in July of 2018, returning briefly as Interim CEO in 2019/20). Bev was an Executive member of the Board of the International Huntington Association (IHA) acting as Vice President. Bev was also a founding member of HD-COPE – a globally coordinated knowledge sharing mechanism to ensure the HD Community voice is shared, in a timely manner, with regulators, industry and researchers.
In 2015 Bev received the Health Charities Coalition of Canada Award of Distinction in recognition of leadership and outstanding support to the charitable health sector.
In 2016 Bev received the American Society of Human Genetics, Advocacy Award, together with Senator James Cowan. This award is in recognition of facilitating public awareness of genetics issues and for work done to move the protection of genetic test information forward in Canada.
Chris Koch
Chris Koch doesn’t let limitations or obstacles stand in his way. Despite being born without arms and legs, Koch grew up like any other small-town kid — playing road hockey, causing mischief at school, and helping out on his family farm. Neither he or his family treated his disability like a tragedy, and instead used it to fuel his dreams. Today, Koch is a motivational speaker who inspires his audiences to continually challenge themselves and build the life they dream of.
Born in Lethbridge, Alberta, Koch was raised in the small farming and ranching community of Nanton, Alberta. Early on, he learned that he would not be raised with pity or sympathy. Sure, he had to do things a little differently and some tasks took him a little longer to complete than others, but he was determined to be just like the rest and was always treated just like the rest. After all, he still had a good head on his shoulders and with that, anything is possible.
Koch loves sharing his story and spreading his message of, “If I Can…” An avid traveler, marathoner, and farmer, his presentation reflects his full life. Simply put, Koch says, if I can do what I’ve done so far in my life, what’s stopping others from doing the same?
Dr. Jeff Carroll
Dr. Jeff Carroll is an Assistant Professor in the Behavioral Neuroscience Program and the Department of Psychology at Western Washington University. His scientific interest is in the understanding the systemic effects of Huntington disease, especially metabolic changes, which he studies using a mouse “knock-in” model of Huntington disease. As well as conducting research, Jeff is a member of an HD family and himself carries the mutation which causes the disease.
Dr. Leora Fox
Dr. Leora Fox is the Assistant Director of Research and Patient Engagement at HDSA and has been working there since August 2017. She obtained her PhD in 2016 in Neurobiology and Behavior at Columbia University, where she studied Huntington disease mouse models. She serves as a contributing author and editor at HDBuzz.
Dr. Rachel Harding
Dr. Rachel Harding is an HDSA Berman Topper Career Development Fellow working at the Structural Genomics Consortium at the University of Toronto. Dr. Harding researches the 3D structure and shape of the huntingtin protein to try and understand how this molecule works and how this Huntington disease mutation might affect this big and complex molecule.
Jimmy Pollard
Although Jimmy’s family is not touched directly by HD, he has been there for scores of people, over many years, as they walked their HD roads in care homes, hospitals and other residential settings. He’s very interested in examining how the challenges in thinking that HD brings about influence our day-to-day interactions and what we can do to accommodate them in our families. He tries to make his talks practical and relevant for everybody
Judith Wahl
Judith Wahl is a lawyer, now practicing as a legal consultant and speaker under the name Wahl Elder law. She previously was the Executive Director and senior lawyer at the Advocacy Centre for the Elderly, a specialty community legal clinic serving all of Ontario, for 35 years and also practiced in a private law firm in Toronto for 6 years.
Throughout her legal career, Judith has been very active in advocating for the rights of older adults and in the development of elder law as an area of practice. She was awarded the Queen Elizabeth II Diamond Jubilee Medal for her contribution to the development of Elder Law in Canada. She is also the recipient of the Osgoode Gold Key award for Public Service and the Ontario Bar Association Award for Distinguished Service.
Mackenzie Remillard
Mackenzie Remillard is the Manitoba Chapter Youth Coordinator as well as the Youth Engagement Coordinator on the YPAHD Executive. He has also been active in the Youth Mentoring Program and plans on continuing his involvement to fight for those who can’t fight for themselves against HD.
Prof. Ed Wild
Professor Ed Wild is a professor of Neurology at University College London (UCL), Associate Director of UCL’s Huntington’s Disease Centre, and a Consultant Neurologist at the National Hospital for Neurology and Neurosurgery. Professor Wild has worked on HD since 2005 and leads a team focusing on clinical trials of new HD treatments and studying cerebrospinal fluid to understand HD. Since 2009, he has been collaborating with Dr. Jeff Carroll to make HD research news accessible to the HD community through HDBuzz.
Ronna Schneberger
Ronna has been a professional award-winning naturalist, interpreter, and hiking guide in Banff National Park for 25 years. In 2016, she became a Forest Therapy guide and trainer, one of the first in Canada. Today she trains forest therapy guides around the world. As an executive coach, Ronna works with leaders, professionals and executives from all over the world using nature as the teacher to create powerful reflections and transformation. Her unique nature prescriptions use proven techniques to help people reset their mind and nervous system so they can reclaim calm and clarity.
Simon Pelland
Simon Pelland is a relationship coach currently living in Bali. Simon’s father died from HD just over two years ago and he is gene positive. Simon hopes there will be a cure in his lifetime to support everyone here, and to allow him to realize his beautiful goal of being a grandfather some day.
The limitations we face in life are often the ones we place on ourselves. Chris Koch’s inspirational “If I Can” presentation is about making the most out of life, with a focus on appreciating what we have instead of worrying about what we don’t.
Despite being born without arms and legs, Koch didn’t let limitations and obstacles stand in the way of achieving his goals and dreams. He still grew up working on his family farm, and has spent his adult life snowboarding, running marathons, and travelling independently.
If a guy without arms and legs can do all this, he says, we are all capable of some pretty amazing things. Sharing experiences and funny anecdotes from his life, Koch leaves his audiences motivated and empowered to build the life they dream of.
The limitations we face in life are often the ones we place on ourselves. Chris Koch’s inspirational “If I Can” presentation is about making the most out of life, with a focus on appreciating what we have instead of worrying about what we don’t.
Despite being born without arms and legs, Koch didn’t let limitations and obstacles stand in the way of achieving his goals and dreams. He still grew up working on his family farm, and has spent his adult life snowboarding, running marathons, and travelling independently.
If a guy without arms and legs can do all this, he says, we are all capable of some pretty amazing things. Sharing experiences and funny anecdotes from his life, Koch leaves his audiences motivated and empowered to build the life they dream of.
Mary-Ann Stushnoff is a certified personal fitness trainer and the owner of Conquest Personal Training.
Mary-Ann has over 20 years of experience working closely with medical professionals specializing in the field of Neurology. Mary-Ann designs and implements exercise programs which alleviate the symptoms associated with movement disorders and improve the quality of life for individuals affected by neurological conditions.
This presentation is designed to improve the quality of life for individuals affected by Huntington’s disease .
She will be demonstrating simple exercises that can be performed at home with minimal equipment. The program is designed to improve balance, coordination, muscle function and strength in a safe, fun and effective format. She recommends performing the exercises when accompanied by a support person, using a sturdy object for a balance and working within your own ability under the guidance of your physician.
Mary-Ann Stushnoff is a certified personal fitness trainer and the owner of Conquest Personal Training.
Mary-Ann has over 20 years of experience working closely with medical professionals specializing in the field of Neurology. Mary-Ann designs and implements exercise programs which alleviate the symptoms associated with movement disorders and improve the quality of life for individuals affected by neurological conditions.
This presentation is designed to improve the quality of life for individuals affected by Huntington’s disease .
She will be demonstrating simple exercises that can be performed at home with minimal equipment. The program is designed to improve balance, coordination, muscle function and strength in a safe, fun and effective format. She recommends performing the exercises when accompanied by a support person, using a sturdy object for a balance and working within your own ability under the guidance of your physician.
Please note: This presentation will cover legal information but it is not legal advice. If you need legal advice, please consult your own lawyer.
Please note: This presentation will cover legal information but it is not legal advice. If you need legal advice, please consult your own lawyer.
Join HD Buzz Editors Prof. Ed Wild, Dr. Jeff Carroll, Dr. Rachel Harding and Dr. Leora Fox for this Q&A panel. Be sure to leave your questions in the chat and they will answer as many as possible in this 50 minute Q&A Session.
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