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COVID-19: A Message from Our CEO

Bev Heim-Myers

March 31, 2020

Dear HSC Community Member:

While the world outside our windows continues to change daily, as the battle against COVID-19 continues, it is heartwarming to see how people are supporting each other as best they can. By adhering to federal and provincial guidelines, together we can all work to #flattenthecurve and help stop the spread of this frightening virus.

Last week, Dr. Mark Guttman of the Centre for Movement Disorders in Toronto, ON, kindly answered a couple of questions around collective COVID-19 concerns, for those affected by or caring for someone with Huntington disease (HD).

This week, I would like to touch on mental health.  During times of crisis, it is especially crucial for individuals with a potential for heightened anxiety, such as those impacted by HD, to manage their mental wellness with care.

Here are some useful tips and insights from the Canadian Mental Health Association (CMHA):

  • It’s normal to feel anxious.
  • Try not to avoid, ignore or suppress anxious thoughts. Instead, be aware of your anxiety and accept that you’re feeling anxious in this situation.
  • Try to keep things in perspective; notice and challenge any thoughts that may be extreme or unhelpful.
  • Self-care is important at this time, as worries can be made worse if we aren’t taking care of ourselves.
  • Lean on social supports, try to get enough sleep, eat healthy, exercise and engage in enjoyable activities.
  • Do the things you would typically do to support your health, and be sure to use caution and follow health and safety guidelines while doing them.
  • Seek information from reliable news sources only.
  • Limit checking in on the latest news to short, defined periods, and refrain from setting related push notifications on your device. Appropriate information consumption may be calming and can lessen the sense of danger.
  • Take the recommended precautions as outlined by Health Canada and other credible health agencies.
  • Remain focused on the factors within your control, such as washing hands, covering your mouth during coughs and sneezes, etc.

For more information, visit https://cmha.ca/news/covid-19-and-mental-health or https://www.camh.ca/en/health-info/mental-health-and-covid-19#coping. If you’re noticing that your symptoms of anxiety (in association with COVID-19 or otherwise) are causing you significant distress or are interfering with your ability to function normally, reach out for formal mental health supports from a recognized agency, such as CMHA, the Centre for Addiction and Mental Health (CAMH) or those in your local jurisdiction. If you’re not sure where to start, this list of local HSC family services workers across Canada may be helpful. Each one of these professionals can help you find the support you need.

Speaking to children about COVID-19 and its impact can be especially difficult. This factsheet from CAMH provides some valuable pointers on helping children and adolescents cope.

As you know, a global travel advisory is in effect. Given that many people are returning, or have returned from travel, this week is a critical week for all Canadians to follow the Government of Canada’s Quarantine Act, which applies to all travellers arriving in Canada.  As individuals, we all have the responsibility to make this better for Canada. Our nation’s Chief Public Health Officer, Dr. Theresa Tam, stressed during her daily update yesterday “we are definitely not out of the woods and now is the time to absolutely double down on all efforts to stem the still rising tide of the new coronavirus”. I encourage all of you to continue to do what you can.  Individually, we have the power to make a difference.

Finally, I want you to know that the HSC staff, and the HSC Board, are working closely together to manage through this turbulent time. I am particularly proud of the HSC staff, who have seamlessly adjusted to our temporary new reality of working differently and safely. Ours is a close-knit team that continues to work together to meet the needs of our community.  On a lighter note, we make time to connect each week through “virtual coffee breaks”.  This regular check-in allows us to refuel, share stories, catch-up and return to our work energized and feeling connected. We also strive to create similar opportunities for our community.  You are our motivation and we will do whatever we can to be there for you.

Let’s all do our part to stay safe for each other.

Sincerely,

Bev Heim-Myers
CEO (Interim)
Huntington Society of Canada


March 24, 2020

Dear HSC Community Member:

Last week, I provided an update on some of the things we are doing to keep you connected and safe during this time of uncertainty. Many of us have never experienced a pandemic like COVID-19, so it is very natural to feel anxious. We understand that some of the guidelines in place, both internationally and within Canada, may seem strange or drastic. It is important to remember that each step is carefully considered to ensure our safety and the safety of our loved ones to control the spread of the virus.

You and your family continue to be in our thoughts during these challenging times. While the HSC office is temporarily closed, our staff remains as accessible as always via email and telephone.  If you have questions or concerns but are uncertain how to direct them, please refer to the contact information provided below.

For the HD community, the COVID-19 outbreak may seem particularly worrisome.  Dr. Mark Guttman, of the Centre for Movement Disorders in Toronto, ON, has kindly answered a couple of questions.  We feel these questions may address some concerns for those affected by or caring for someone with HD and thank Dr. Guttman for taking the time to address them.

Q: Does COVID-19 impact a person with the HD gene mutation differently?

A: We do not have experience with COVID-19 infections in HD patients. However, I would expect that people with the gene expansion who are not currently symptomatic with HD have the same effects as other people of their age group. People who are symptomatic with HD may have a higher risk of complications because they have a chronic disease –and this will depend on their symptom level. Patients who are older have higher risk and patients with other medical problems also have a higher risk. It is best for all symptomatic patients to be extremely cautious and avoid contact with others who may transmit COVID-19.

Q: What is happening with clinical trials in Canada in light of the COVID-19 outbreak?

A: HD clinical trials are still ongoing in Canada. The most important aspect is that participating in clinical trials should not put patients at risk and each individual should decide what is best for them. Some sites have been told by their institutions that non-urgent care will not be offered and this includes clinical trials. Other sites are able to continue with some or all of their research activities.  Some of the studies are allowing patients to skip doses to deal with issues arising from COVID-19. This includes patients who are self-isolating due to travel or possible exposure or closure of MRI scans or other components of the study.

We cannot identify how research studies will be affected as the COVID-19 pandemic evolves. There is uncertainty as to how we will be able to manage the pandemic in Canada, how long the social isolation measures will be in place and how this will affect research studies.

As for HSC, we will continue monitor and follow provincial and federal guidelines closely, and respond appropriately. For further updates as they become available, please go to our website at www.huntingtonsociety.ca or Facebook page at https://www.facebook.com/HuntingtonSC/. Should you have any specific questions, please email us at communications@huntingtonsociety.ca. Your message will be forwarded to the appropriate staff member.

These are indeed extraordinary circumstances for all of us.  We applaud you for your patience and understanding, and thank you for your support. Please remember that we will continue to remain accessible to you during this time of disruption.

We wish our HD community a healthy and safe time in the coming weeks.

Sincerely,

Bev Heim-Myers
CEO (Interim)
Huntington Society of Canada


March 16, 2020

Dear HSC Community Member:

Our thoughts and prayers are with you and your loved ones during these uncertain times. Like so many, I have a heavy heart as I learn each day about the new impacts COVID-19 is having on communities across the country and around the world. At the Huntington Society of Canada (HSC), we continue to monitor this situation closely.

Let me take a moment to summarize some of the things we are doing to keep you connected – and safe.

In light of recent developments and the latest advice from the federal government, provincial government and local public health agencies, HSC has made a number of decisions to prioritise the health and safety of our staff, our community and their families.

Recently, we have adapted face-to-face meetings to virtual and for now, we have cancelled or postponed any planned international or domestic travel.

Our professional team of social workers will look at virtual options for any gatherings planned and where they cannot offer the program via an online medium outreach, teleconference is still an option.

HSC is already skilled and experienced at delivering online services. We will keep you posted of any moves to virtual support as they become known, whether that be via videoconferencing, phone or email. We thank you in advance for your patience and understanding as we work to expand our capacity for staff to deliver more support online.

With respect to larger and mass gatherings, in March HSC was prepared to host the international meeting of HD-COPE in Toronto.  However, due to COVID-19 concerns we collectively made the decision to cancel the meeting. The HD-COPE team continues to work diligently to find alternative ways to connect the international group. This is a sad but necessary outcome.

Our chapter development team is working hard to assess how COVID-19 will affect event planning across Canada and what this will mean for our National Conference, set to take place in November.

In terms of day-to-day operations, given direction from federal and provincial governments and the Region of Waterloo Public Health Unit, the decision was made to close the Waterloo office. Until further notice, [[UPDATE ALERT]] the office will be closed until April 14, 2020.

We have taken these precautionary measures in light of the developing COVID-19 situation. The well-being of our staff, our stakeholders and their families is a primary concern. We are also acting with the health and safety of the broader HD community in mind.

We will continue to monitor and follow provincial and federal guidelines closely, and respond appropriately. For further updates as they become available, please go to our website at www.huntingtonsociety.ca or Facebook page at https://www.facebook.com/HuntingtonSC/. Should you have any specific questions, please email us at communications@huntingtonsociety.ca.

These are indeed extraordinary circumstances and we thank you for your patience and understanding. We wish our HD community a healthy and safe time in the coming weeks.

Please remember that we will remain accessible to you during this time of disruption. Together, we will take care of one another.

Sincerely,

Bev Heim-Myers
CEO (Interim)
Huntington Society of Canada

Original Post: March 16, 2020
Last Updated: March 30, 2020


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