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Community Education Forums

This year, HSC is pleased to offer three virtual Community Education Forums (CEFs), as part of a seasonal series.

With our CEFs, HSC provides a forum wherein individuals, their carers and families can meet to learn about the most recent updates in HD, network with community members and perhaps most importantly, have the opportunity to have their questions answered by leading professionals who specialize in HD.

We are working on confirming topics and speakers and cannot wait to share the line-up with you. Stay tuned to this page for updated details as they become available.


May 30, 2020 Community Education Forum
1:30 p.m. – 3:00 p.m. EDT

Learn to Fill Your Cup: Simple Tools to Relieve Stress and Caregiver Burnout and Optimize Health

Join Natalie Marnica, as together we explore information and resources needed to reduce stress and anxiety, build resilience and care-give sustainably. Learn how chronic stress affects your body, and how mind-body approaches, including conscious breathing, meditation, mindful movement and lifestyle habits, can help to alleviate chronic stress, reverse caregiver burnout and improve overall health and wellbeing.

About Natalie:

Natalie is a certified yoga therapist with over 1000 hours of training and 10 years of experience teaching. Her journey with yoga started after a traumatic car accident that left her in chronic pain. Born in a family with  Huntington disease (HD), Natalie has spent many years caregiving for her mom and other family members. She’s been a volunteer with HSC for over 5 years, and currently sits as President of the Toronto Chapter as well as serving as a youth mentor for HSC. In 2010, she founded Sacred Mountain Yoga which provides yoga therapy, chair yoga and workshops around the GTA and online. As a person who has managed to reverse caregiver burnout, heal chronic pain and depression, she truly believes that even in dark times there is still hope for a better future. Her experiences give her a unique approach and she’s very passionate about helping others!

CLICK BUTTON TO REGISTER
FOR MAY 30, 2020 CEF.


Nov. 14 , 2020 Community Education Forum
1:30 p.m. – 3:00 p.m. EST

HDBuzz Research Update

With multiple huntingtin-lowering trials in progress and more on the way, it’s a time of great progress and excitement in research to develop and test new drugs to fight Huntington disease (HD). But lots of new therapies means more research and terminology that could confuse and overwhelm, and more hype that could lead to disappointment. HDBuzz editors, Dr. Jeff Carroll and Dr. Ed Wild are here to explain what’s going on, what’s coming soon, what it all means, and where to direct your excitement and energy in order to help in the fight.

About Dr. Ed Wild, FRCP, PhD:

Dr. Wild is Associate Director of University College London Huntington’s Disease Centre, and a Consultant Neurologist at the National Hospital for Neurology and Neurosurgery. Ed 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. He has authored seven book chapters and over 80 peer-reviewed scientific publications and leads the global HDClarity study. Since 2009, he has been collaborating with Dr. Jeff Carroll to make HD research news accessible to the HD community through HDBuzz. Ed was a proud recipient of the HSC’s 2012 Michael Wright Community Leadership Award.

About Dr. Jeff Carroll, PhD:

Dr. Jeff Carroll is a scientist studying HD as an associate professor at Western Washington University. He trained as a post-doctoral fellow in the lab of Marcy MacDonald at Massachusetts General Hospital/Harvard Medical School after completing his PhD under the supervision of Michael Hayden at UBC in Vancouver. He has worked for many years on Huntingtin-lowering experiments in mouse models – his recent work involves understanding what the Huntingtin protein’s normal roles are in cells, particularly with respect to DNA damage and repair. As well as conducting research, Jeff is a member of an HD family and himself carries the mutation which causes the disease. Jeff also co-founded and serves as co-editor-in-chief of HDBuzz.net with Dr. Ed Wild.



CLICK BUTTON TO REGISTER
FOR NOV. 14, 2020 CEF.


Feb. 27, 2021 Community Education Forum
1:30 P.M. – 3:00 P.M. EST

Genetic Testing

Join Clare Gibbons (Genetic Counselor at North York General Hospital in Toronto), as we learn about predictive and diagnostic genetic testing for Huntington disease, from basic science to making the decision to be tested. This session will also provide information about the genetic components of some current treatment trials.

About Clare:

Clare Gibbons received a Master of Science degree in Genetic Counseling from Sarah Lawrence College in 1996 and then joined the Genetics Program at North York General Hospital in Toronto where she currently works as the manager of Clinical Genetics.  Throughout her career, she has participated in the care of a wide variety of patients and has been a member of the North York General Hospital Huntington Disease Multidisciplinary team for 20 years.  Clare is currently a research coordinator for Enroll HD and has previously been involved in clinical drug trials for the treatment of HD.  She has also been an investigator in clinical research studies involving computerized cognitive rehab for people with HD and talking to children about their risk for HD.

CLICK BUTTON TO REGISTER
FOR FEB. 27, 2021 CEF.


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