2020 Postcard from Palm Springs
Highlights from the 2020 CHDI HD Therapeutics Conference are now here! This year’s Postcard covers HTT-lowering therapeutics, including an
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COVID-19: A Message from Our CEO
May 17, 2022
Dear HSC Community member,
The COVID-19 pandemic continues to evolve, as does our response. We want to update you on how the Huntington Society of Canada (HSC) is planning for the delivery of support services, events and community activities.
First, we want to acknowledge the success of our virtual opportunities, from support groups to education sessions and events such as our conference. We have extended our reach by offering online programs, allowing participation from the comfort of one’s own home. As well, HSC staff members continue to be available through phone, email or videoconference. We strongly encourage everyone to connect via these means. We are eager to stay in touch.
In our planning for in-person activities, we have shared our guiding principles with our staff, Chapters, and event volunteers across the country. They are also posted on our website:
These guiding principles represent our efforts to prioritize the health and safety of our community members while still offering a mix of in-person and virtual activities and services. Adjustments will be made as required based on Public Health guidelines.
We are committed to respecting different comfort levels and making community activities and events, as well as HSC’s support and educational services, as safe as possible.
Sincerely,
Shelly Redman
Chief Executive Officer
Huntington Society of Canada
January 14, 2021
Dear HSC Community member,
As the COVID-19 pandemic continues, we wanted to reach out to share how we at Huntington Society of Canada are approaching and incorporating public health regulations and optimizing safety.
At the Waterloo Head Office, staff members continue to work remotely. All in-person events and chapter meetings remain canceled, as per municipal and provincial regulations. The family services team continues to be available to provide support, education and resources via telephone or video calls. We are also working to provide Personal Protective Equipment (PPE) for our family services team for when in-person services resume.
We know that continuing to live under the constraints of this pandemic is challenging. By adhering to provincial and municipal regulations, we are all prioritizing the health and safety of our Huntington disease community as well as that of people across the world.
We celebrate our positivity, initiative and continued commitment in these unsettling times. Although we cannot meet face to face, we are available for support. Please reach out if you have any questions or concerns.
Sincerely,
Shelly Redman
Chief Executive Officer
Huntington Society of Canada
Shelly Redman
Oct. 20, 2020
Dear HSC Community Member:
As we all know, the COVID-19 pandemic has created many challenges around the world, including Canada and not least the Huntington disease (HD) community. These are indeed trying times, yet our community remains resilient and positive. For that, we salute you.
The Huntington Society of Canada (HSC) secures much of its funding through generous donations and community events. While we continue to see support through donations at pre-pandemic levels and remain thankful for that, our volunteers pivoted seamlessly to operating “virtually” as best they could in an attempt to maintain the success rates for their events. It has been absolutely astounding to witness such flexibility.
While we all grew optimistic as COVID-19 restrictions were gradually relaxed across Canada, it has become clear recently that the country is now headed into a second wave of COVID-19, with reported cases on the increase in most provinces.
As such, HSC continues to be firm in discouraging public gatherings until further notice.
As each province across Canada braces itself for a spike in COVID-19, we at HSC would like to ensure that our volunteers and supporters remain as safe as can be. With respect to chapter meetings and other social gatherings, we reiterate that coming together virtually where possible continues to be the best option. It is also a priority to ensure that we protect ourselves and our neighbours from the spread of COVID-19.
Nothing is more important than the safety of our community.
Let’s all do what we can to come through this safely and stronger than ever. Any questions can be directed to Kevin Bunn, Manager, National Events and Chapter Development at kbunn@huntingtonsociety.ca or 519-496-0970.
Sincerely,
Shelly Redman
Chief Executive Officer
Huntington Society of Canada
May 21, 2020
Dear HSC Community Member:
The Victoria Day holiday is almost a rite of passage for Canadians. It signals the beginning of summer: cottage openings and barbecues; warm sunny days ahead; and the ever-present aroma of freshly cut grass. Although this past long weekend wasn’t quite what many of us might have envisioned – here we are. We made the most of it!
Indeed, it seems that amidst the global COVID-19 pandemic, human beings are developing a penchant for making lemonade from lemons. The ability to adapt is, after all, the human quality to which many attribute our advanced evolution as mammals. I am especially proud of the Huntington disease (HD) community for the way we are enduring the struggles we currently face – on top of the day to day challenges that individuals and families affected by HD must overcome. At a time when it would be understandable to show anxiety or to be overwhelmed, your trademark sense of hope continues to shine through. Bravo!
It is somewhat ideal that HD Awareness Month should fall a few weeks into our temporary reality of home isolation, physical distancing and self-quarantine. The timing has allowed us to reflect on the solidarity of our community, carried on the wings of inspiration. When we first began to hear back from sites which cannot light up this year due to COVID-19 restrictions, here at the Huntington Society of Canada (HSC), we agreed that any site to come on board would be a victory. We had no idea that we would see participation at the level we are witnessing, for monuments and landmarks across the world. Although we won’t break the 2019 record as we had hoped, coupled with the participation at the residential level – including porch lights and sidewalk art – 2020 is already a huge success. Each of those landmark #LightItUp4HD sites means that a volunteer worked hard behind the scenes. Each residential effort means that a homeowner dug in to do what they can, while complying with government guidelines. Every single accomplishment is a beacon of hope and a testament to strength and determination.
As an organization, we can also build on the strength of the global HD community for further inspiration and buoyancy. And that is just what we will continue to do. As we navigate the uncertain future brought on by COVID-19, there is one thing that we know for certain – our collective fight against HD does not stop.
To that end, last week, the global Huntington’s Disease community was proud to announce May 15 “International Huntington Disease Awareness Day,” a special date for the global Huntington’s Disease (HD) community to unite together to raise awareness for Huntington’s Disease. In the face of adversity, as a global HD community, we stand together and continue our mission to provide families from all around the world with support.
And we will come out of it stronger, together.
This year, arriving at the agreed upon date and getting the word out all happened rather swiftly. In 2021, however, we will make International Huntington Disease Awareness Day bigger and more impactful. Stay tuned for more on that over the coming months.
In closing, HSC will no longer issue COVID-19 updates on a weekly basis. We will, of course communicate any significant change to our business operations as dictated by regulatory bodies or new information of benefit to the HD community, should either scenario arise. For the time being, however, our subscribers are fully abreast of HSC’s temporary pandemic practices.
Having said that, we know you still have questions and hope that this link [COMING SOON] to COVID-19 coping information, generated by our Family Services team will help address some of those concerns. As always, please reach out to HSC if you need assistance. Email communications@huntingtonsociety.ca, and we will ensure your email finds the appropriate support staff.
As warmer weather arrives, let’s remind ourselves that we are adjusting well to the changes thrust upon us as we all do our best to help #flattenthecurve. It is important to be proud of that. A Japanese scholar, Okakura Kakuzō, once said that the art of life is a constant readjustment to our surroundings. If that is the case, we are all becoming beautiful artists during these trying times.
May 12, 2020
Dear HSC Community Member:
While the Mother’s Day weekend certainly proved that Mother Nature dances to her own beat (in Ontario, one staff member saw 8 inches of snow on May 9!), signs of Spring cannot be ignored. Flowers are blooming, songbirds are returning and trees are budding. It is lovely to see. I hope that wherever you are, you are able to spend a few minutes outside as the weather allows and enjoy some fresh air.
At the same time, the view from the CEO’s chair at the Huntington Society of Canada (HSC) in my home office, is equally encouraging. Huntington disease (HD) awareness month is now in full swing. Volunteers across Canada continue to send in new #LightItUp4HD sites, showing that, in a spirit true to form, our HD community is persevering with their requests. At last count, 36 sites across Canada and the world have – or will – participate, and each of those sites is a small victory; a success we can celebrate in these unusual times.
Nonetheless, not only does our community persevere, it adapts. Not to be deterred by temporary government guidelines creating a challenge for HD Awareness events, our community is rallying with residential light ups, sidewalk art, posters and even virtual flag raisings. Bravo! Many thanks to those of you who have also participated in media interviews. The key during these four weeks is to raise awareness about HD and every effort undertaken which results in one more person learning about HD is an effort worthwhile. May is the perfect month to celebrate our community for our resilience, our determination and the collective energy that exudes from each and every one of you.
That optimism is thanks, in part, to the promising clinical trials currently taking place across the country. While COVID-19 means bench researchers may not be in the lab right now, they are still working hard on your behalf to find new therapies for HD. For the most part, clinical trials are still moving forward and those clinical trials would not happen without the commitment from individuals and families impacted by HD. Again, thank you. Especially during this pandemic, your determination to give back by participating where possible is testament to your courage.
So, as communities across Canada begin with plans to re-open slowly but surely, our blue and purple lights are a resounding beacon of hope, for many reasons.
I encourage you to take the chance to refuel this month, personally. Please, use the vigour of our community to – as Natalie Marnica, our guest speaker for the virtual Community Education Forum on May 30, says – fill your cup. I truly believe that the COVID-19 pandemic will only make us stronger than we already are.
As always, please reach out to HSC if you need assistance. Email communications@huntingtonsociety.ca, and we will ensure your email finds the appropriate support staff.
Stay safe.
May 4, 2020
Dear HSC Community Member:
As we embark on May Awareness Month – a time of hope and camaraderie for the Huntington disease (HD) community – it is perhaps fitting that we are also beginning to see glimmers of hope at the end of the COVID-19 tunnel.
Some of you may have heard the term “Double Bubble”, with New Brunswick being the first Canadian province to float the idea and Newfoundland and Labrador exploring the option as well. The concept aims to minimize social isolation as the COVID-19 pandemic and related public health measures wear on. It is an approach in which two isolated households join together. Medical experts have said expanding a bubble increases the chance of spreading infection if people are not mindful and careful, but there IS a way it can be done. Especially for our HD community, this may be welcome news, but it remains to be seen if this concept will roll out across Canada.
Indeed, various jurisdictions around the world are beginning to talk about what a relaxation on COVID-19 restrictions may look like, and how best to go about it. The news is good, yet there is much debate about how to do this safely.
You may recall a conversation we had with Jenna Shea (an HD community member and part-time caregiver for her mother, who was diagnosed with HD in 2013), which we featured in our update on April 20, 2020. Some of her initial concerns around COVID-19 stood out as a potential challenge for many caregivers. In particular, when asked about life changes driven by COVID-19, below are two further thoughts Jenna shared:
As the pandemic became more serious what has changed for you?
My concern over the sustainability of social distancing with an unknown deadline has changed. Being able to relieve my dad, who provides a significant amount of care to my mom, and then of course seeing my mom are concerns I think about daily. I usually provide care to my mom for roughly 10 days per month. It’s relief for my dad and wonderful for us to be able to spend valuable time with her and take care of her. If this pandemic continues and social distancing remains in place for months, it isn’t sustainable to not see my mom over such a long time frame. Now, my thinking is “how I can safely integrate someone from a different household into my household during the pandemic?” Prior to this, there was never any question. My mom would easily transition from her house to mine. But now, there are greater safety considerations.
Are there any tips or tricks you would recommend to others who are affected by HD, to help during COVID-19 social distancing measures etc?
I am still looking for some tips and tricks myself! For me, it has just been very important to let go of expectations that may have previously had some control of my life. I have two young kids and live in a small home in the city. My home comes completely undone multiple times a day and I’ve just had to let it go. As mentioned previously, it was difficult for my mom to accept the need to implement social distancing measures. Once she accepted it, along with my dad they decided on a schedule to go out for drive-thru takeout food twice a week and going for drives once a day just to get out and break up the day. For me, I need to try to keep things in perspective, when my mom is struggling with these drastic changes. I need to remind myself that I am dealing with someone who lives with a neurodegenerative disease who is experiencing a huge change in her routine, and then I calm down.
Jenna’s experiences mirror those of numerous individuals in our community. Social distancing restrictions have pushed many of us to our limits in various ways, and we are all eager for a return to normalcy, but for the welfare of all, governing bodies remind us: patience is a virtue.
When it comes to reopening the economy, perhaps the right term to use is cautious optimism. After so many people have followed the recommended guidelines on social distancing, doing their best to help #flattenthecurve, the process of re-opening the world needs to be (and no doubt will be) handled with prudence, so that our efforts to this point have not been in vain. At the Huntington Society of Canada (HSC), we will continue to follow recommended guidelines and strongly urge our community to do so as well. You have all done so extraordinarily well so far, and I know your resilience will continue for as long as needed.
A testament to that resilience is within the pages of our latest edition of our National newsletter, Horizon. At national office, our business operations may have changed, but our work continues – as does that of our HD researchers and the efforts of our volunteers across Canada. In fact, as you will notice, so much is going on that we have added four extra pages to this issue. What a feather in the cap of our great community!
Please be sure to read this edition and celebrate HD Awareness Month by reflecting on all that we have achieved – together. I am sure we will have the chance to be together, physically, in the not-too-distance future.
April 27, 2020
Dear HSC Community Member:
It is hard to believe that it has been six weeks now since the Huntington Society of Canada (HSC) transformed our ways of doing business in order to comply with the federal, provincial and local COVID-19 recommendations. While the Huntington disease (HD) community has always been an especially caring one, I continue to be amazed at the compassion I witness in emails, phone calls and other forms of communication. Thank you for your ongoing support.
In my second update, back on March 24, we included a brief update from Dr. Mark Guttman of the Centre for Movement Disorders in Toronto, ON regarding what COVID-19 meant for the HD community and in terms of clinical trials. We felt some of the messaging was worth repeating, as we continue to get questions.
Now that more is known, our friends Dr. Sarah Hernandez and Dr. Ed Wild at HDBuzz have succinctly prepared some more questions and answers around COVID-19 and what it means for HD research. I am pleased to share a portion of this valuable insight below. As they reassure us, behind the frenzied storm of home isolation and shopping pandemonium, scientists around the world have been working tirelessly to move research forward at an unprecedented speed so that we can understand the virus and develop a treatment or vaccine.
How does this situation affect the HD community? What does COVID-19 mean for HD research? Our trusted experts explain:
What does COVID-19 mean for individuals and families affected by HD?
A key question for many in the HD community right now is “Am I, or is my loved one, at greater risk for COVID-19 because of HD?” The answer to that is, it depends. On its own, having the genetic mutation that causes HD does not make anyone more or less susceptible to COVID-19 than someone without HD.
What would make an individual with HD more susceptible to COVID-19 is if they had any underlying conditions that put them in the “high-risk” category. Those can be as obvious as having asthma or being a smoker. This can also include individuals with HD who are symptomatic, since we know that swallowing, clearing secretions from the lungs and self-understanding of limitations can be impaired by HD.
On its own, having the genetic mutation that causes HD does not make anyone more or less susceptible to COVID-19 than someone without HD. What would make an HD individual more susceptible to COVID-19 is if they had any underlying conditions that put them in the “high-risk” category. To stay safe and healthy we should all continue doing what the WHO recommends: wash our hands regularly for 20 seconds with hot water, clean surfaces with a disinfectant, and practice social distancing. Everyone should also remain vigilant for the symptoms of COVID-19, which include fever, a dry cough, shortness of breath, and fatigue.
Some individuals with HD at particularly high risk may need to isolate themselves even more strictly. You should seek advice from your health provider if you are concerned.
What does COVID-19 mean for HD research?
Many scientists who usually spend all day in the lab studying HD have been asked to stay home so that they can practice social distancing and remain safe. This means that HD-related research will slow for the short time during this pandemic. A big concern is ensuring that precious samples are kept safe, and experiments that had to be shut down were paused in a way that preserves them to be restarted once it’s safe to hang out in the lab again.
While HD researchers may not be going into lab every day, they are still hard at work to combat this disease. They may not be doing experiments at the bench, but they are reading papers to develop their next idea, compiling data to better understand HD, and writing papers to disseminate what they have learned to the world. The labs may be quieter, but HD researchers are still hard at work in their fight against HD.
What about clinical trials?
With many countries’ entire healthcare systems turned over to providing care for people with COVID illness, and many doctors and nurses diverted from research into frontline care, an impact on HD clinical trials is inevitable. However, all those involved are doing everything they can to minimize the impact and carry on with whatever trial activity they can.
In practice, the impact will vary quite a bit from one site to another and from one trial to another. Some sites may still be enrolling new patients, while many will be forced to pause recruitment of new participants and focus on continued care and dosing of patients already involved. Many sites will likely convert onsite trial visits into telephone calls, or postpone visits until it is safer to carry them out in person.
Decisions about what activity can carry on are largely determined locally, by the hospitals and local and national governing bodies that direct healthcare resources. Trial sponsors (companies like Wave, Roche and UniQure) fund, support and organize the trials. So far, all the trial sponsors we have heard from have indicated that they continue to be committed to running and completing the trials despite the interruption the viral pandemic may cause
It may be that some modifications need to be made later, to compensate for trials that were unexpectedly interrupted. For instance, they might need to treat existing patients for longer, or recruit additional patients to make up for lost time. Later, the regulatory agencies like the FDA might need to be more flexible when considering data from trials with higher than normal levels of missing data. With so much unknown about how long COVID will impact things, it’s difficult to be more specific, but the smart people who invented this cool generation of HD drugs and brought them to trials, are now working full time to keep those trials running as well as humanly possible.
Remember: While HD researchers may not be going into lab every day, they are still hard at work to combat this disease.
As our partners at HDBuzz write, this virus has undoubtedly brought a stressful and scary time for the entire world, but there have been a few bright spots. While the pandemic will eventually fade away, we will be left with its silver lining: many have been able to spend additional time at home with loved ones, even if that means having a computer on their lap. Scientific discoveries are being made at break-neck speed as the global research community comes together to fight for a common goal.
Please, reach out to HSC if you need assistance. Email communications@huntingtonsociety.ca, and we will ensure your email finds the appropriate support staff.
Remember, this too shall pass. Stay safe.
April 20, 2020
Dear HSC Community Member:
At times like this, it’s the simple wonders and magical moments that give us peace. The world continues to change daily and for all of us, especially our families, this unpredictability and mixed messaging creates angst and uncertainty.
We all have the power to do our part by following the direction of our government bodies. That is the easy part – we can wash our hands, stay home, social distance and lovingly connect with our friends and families through technology. But, for someone who has Huntington disease (HD), change to routine can bring confusion, and this lack of ability to understand why change is necessary in the first place is a challenge for caregivers and others as they interact with people with HD.
In a conversation with Jenna Shea (an HD community member and part-time caregiver for her mother, who was diagnosed with HD in 2013), some of her initial concerns around COVID-19 stood out as a potential challenge for many caregivers. Jenna’s involvement with the Huntington Society of Canada (HSC) began when Jenna leveraged our family services program. From there, Jenna became a mentor for the HSC Youth Mentorship Program and has supported HSC’s efforts to raise awareness by sharing her HD story with stakeholders, the Canadian HD community, and even globally.
When asked about the impact of COVID-19 on our families, below is one thought that Jenna shared:
My mom is normally social and habitual, so COVID-19 is very difficult. Initially, things were stressful because my mom continuously pressured my dad to take her to visit my brother and to get into stores. It was hard for her to make an adjustment. She went through a very anxious period of time in which she just did not think logically about the emerging situation and needed a lot of coaching and reassurance. She now understands that it is not in her own best interest – or anyone else’s – to continue visiting with my brother and that she needs to stay out of stores. She has been practicing social distancing and seems to have adjusted, but it was hard. To break things up for my mom and to give her something to look forward to, she joins my dad for long drives around their area. They find open water and park their car by the shore to sit and talk. Once or twice during the week, they go into town and get fries and a burger from a drive-thru window.
For a person with HD who may normally be as social as Jenna’s mother, social distancing in particular may be extremely difficult to comprehend and comply with. Thanks to inspiration from our international Huntington disease association partners, HSC has created the graphic to the right for download as a full-page document. Please feel free to click the image in order to download, print and present as needed. It may help healthcare providers and emergency medical service workers to understand and help your loved one a little better, under COVID-19 guidelines.
Meanwhile at HSC, our budgets are changing daily as we consistently strive to adapt to this new reality while working so hard to protect our core mission: supporting our families. Where we wish we could predict the future to know where all this is going, we can’t. What we can predict is that we have an incredible community that supports us. Those that believe in us have and will, continue to help us. Those that believe in us but cannot help us right now; know we are here to help them.
As always, reach out if you need assistance. Email communications@huntingtonsociety.ca, and we will ensure your email finds the appropriate support staff.
Please stay safe, and remember we WILL get through this.
April 6, 2020
Dear HSC Community Member:
Ours is a different world this April as countries around the globe implement various social distancing measures to help stop the spread of COVID-19 and #flattenthecurve.
As many of you likely know, the Huntington Society of Canada (HSC) has implemented a number of practices to help keep our staff, volunteers and the Huntington disease (HD) community that we serve, safe. You can read more about these in previous CEO updates below.
HSC continues to follow the regulations in place at the federal, provincial and municipal levels. Social distancing and self-isolation are a critical part of controlling COVID-19. Unfortunately, this means that cities, towns and other municipalities are discouraging public gatherings, which includes the flag raisings normally planned as part of HD Awareness Month. At this time, HSC is asking all volunteers working on behalf of HSC to withdraw any flag raising or other public gathering requests associated with HD Awareness Month.
It is also important to remember, as we ask for sites to #LightitUP4HD, that many municipalities are currently overwhelmed with demands on their public health units and other pressing concerns around COVID-19 containment. With limited staff available in municipal offices it is difficult to secure commitments for #LightItUp4HD requests. At this time, HSC encourages volunteers to continue with requests but to be mindful that other priorities may be more pressing in May 2020. Do not be disheartened with lack of response. This is a disruptive year and any site that we manage to get on board is a success story.
Consider May Awareness Efforts at the Residential Level
While the number of landmarks participating in #LightItUp4HD may be lower in 2020, here are some local ways (with social distancing in mind) that you can create awareness about HD at home:
- Create posters for windows and doors
- Install purple or blue porch/Christmas lights
- Hang home-made HD ornaments on a tree in your front yard
- Draw on your sidewalk or driveway with sidewalk chalk
- Post on social media and include pictures of the above – challenge friends to participate
- Consider a Facebook fundraiser during May to raise awareness and funds for valuable HSC work such as family services outreach and research support
We can still make HD Awareness Month a success – even if it’s virtual – in May 2020!
Thank you for what you do. Remember to stay safe.
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.
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.
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 remain closed.
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.
Original Post: March 16, 2020
Last Updated: October 20, 2020