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SCLERODERMA CANADA 2020 Winter Edition Newsletter

TABLE OF CONTENTS Letter from the SC Team

COVID-19 by the Numbers - Dr. Junek

Scleroderma Conference Report

June Awareness Recap

Patient Support Update

Virtual Legislative Meetings

Use of Extracorporeal Photopheresis in

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Scleroderma: A Review - Dr. Osman

Update from our friends at SPIN

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Blue Ribbon Campaign and Holiday Gift Giving

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Scleroderma Holiday Gifts

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LETTER FROM THE SC TEAM As 2020 comes to a close, I think it’s safe to say that there are many things we’ll be happy to put behind us. It’s been a difficult and challenging year and like the rest of the world, Scleroderma Canada has been forced to adjust and find new ways to persevere.

We are proud to share that with the help of our supportive scleroderma community, we have been able to the make the most of what this year has offered. We have learned to adapt to continue to bring critical services, education, research and awareness to patients, caregivers, educators, and the general public.

We have pivoted in the time of COVID-19 to begin to offer services on a virtual level, allowing us to bring patients and caregivers together from across the province. We have developed new support groups, connecting patients that would otherwise not have been connected. We have been able to increase the frequency of our education sessions, bringing the latest research and information to our members. We have also been successful at maintaining our financial commitment to raise much needed funds for research, as we forged ahead with a virtual June Awareness campaign, exceeding our goals and last year’s accomplishments.

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As we look ahead to 2021, we are aware that much will remain the same for some time. We will likely continue to operate on virtual platforms and probably wonâ€™t be able to gather in groups, but for SC, this will not pull us apart.

We will continue to look for creative ways to offer our services and to adapt to a new way of life. We will continue to assist those living with scleroderma in any way we can, as we strive to find a cure. Research, education, fundraising, and awareness will continue to be our priorities and we will seek out innovative ways to achieve these goals, in 2021.

We would like to wish you all the best for the upcoming holiday season.

Thank you for your ongoing support and please stay safe.

We look forward to seeing you in 2021!

Sincerely,

John Malcolmson Interim Executive Director

Lacey Battaglio Manager of Communications & Events

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COVID-19 BY THE NUMBERS DR. JUNEK Updated: October 27th, 2020 by Dr. Mats Junek MD MSc

Cases

214,310 (5.7 per 1000)

Burden

3–6 million may be positive (no data in last few months)

Deaths

9,931 (4.6% of cases; 75% in LTCs)

Growth

2,200 cases/day on a ‘flattening’ second curve

Testing

9,857,000 tests done, 26.2% of population

Globally

85th by population for cases, 37th by population for deaths

The Second Wave Likely due to shifting balance of priorities and COVID fatigue. Cooler weather played an unclear role. 60-70% of cases are in individuals <40, who are not as sick but are possibly creating more infection due to COVID fatigue and under-recognition of illness There is a much lower burden of hospitalization and death Children do not transmit COVID as often as adults, and do not suffer as severe an illness. Targeted measures more than universal precautions.

On COVID Vaccinations

There will likely be a COVID vaccine approved in early 2021 Vaccines have so far been 30-70% effective, similar to the flu vaccine Vaccine distribution will likely be later in 2021, only by 2022 will there be a realistic chance of having the virus well contained

To read more of Dr. Mats Junek document, please click here.

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SCLERODERMA CONFERENCE UPDATE The

Scleroderma

Society

Ontario

was

honoured

host

this

year’s

19th

bi-annual

National

Scleroderma

Conference. Participants joined us virtually to attend educational sessions from October 5th-9th, 2020. The event hosted 155 attendees, more than 15 speakers and daily video chat sessions for registrants to participate in, as an open, peer-to-peer discussions.

Flamborough-Glanbrook MP, David Sweet and Ontario’s Minister of Health, Christine Elliott kicked our week off as they brought personal greetings to our participants. Scleroderma Canada’s President, Jason Doucette also welcomed our group sharing thanks and well wishes for a successful event.

Our conference featured three keynote speakers, opening with Dr. Brett Thombs who shared updates from SPIN, we heard research updates from Dr. Marie Hudson and our closing keynote was brought to us by award-winning leader, CEO, speaker and author, Betsy Craig, who lives with scleroderma.

Our online event showcased best-in-class speakers’ research, initiatives, tools, guidelines, practices, and support networks, in Canada. The goals of the event were to provide current and consistent educational information for patients and health care workers, to promote and support regional groups in Canada, to support research for the development of treatments and finding a cure and finally to promote awareness of scleroderma across Canada.

Although registrants missed seeing each other in person at this year’s event, feedback showed that overall, they found the event to be educational, well organized and easy to participate in.

The Scleroderma Society of Ontario is grateful to our speakers and all guests, for their willingness to pivot to a virtual platform this year. It was a privilege to continue bringing you educational content and we thank you for your valued participation.

Please visit Scleroderma Canada’s YouTube channel to find full recordings of all speaker sessions and

conference highlights.

Thank you to our Sponsors Boehringer-Ingelheim, Mallinckrodt, Janssen, and Corbus.

“To be able to be a part of this year’s conference is wonderful, as I would not have attended if it were not for technology.” “It is inspiring to know that there are people who are so concerned and involved with scleroderma research and treatment.” “Loved and appreciated the personal testimony of patient’s journeys. Sometimes I feel so alone but I have so many “brothers and sisters” on this journey. I leave this conference as I did in Calgary (which was my first time attending) supported, encouraged and motivated. Thank you so much to everyone.” “This webinar was so well done. The best I have ever participated in. Thank you!”

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JUNE AWARENESS RECAP We are proud to report that we were successful in adapting and evolving our approach to delivering critical June Awareness activities during the early stages of the COVID-19 global pandemic. Our 2020 Walk and Run in the Park for Scleroderma became a virtual event exclusively. Allowing our patients, caregivers, friends, and family members, to forge ahead, maintaining an incredible sense of accomplishment and community. There were 10 existing walks across Canada or participants could Create-Your-Own-Walk and get involved in the way that worked best for them to raise funds and awareness. Participants leveraged their personal social media platforms to get the word out as we’ve

never

seen

before.

added

#scwalks2020

the

growing

list

popular

Scleroderma

hashtags

#Scleroderma, #SclerodermaWalk, #SclerodermaAwarenessMonth, #WorldSclerodermaDay. We are so proud of the response and the support from our community.

Scleroderma Atlantic Chapleau, ON Create Your Own

$12,140.00 $320.00 $6,125.00

Edmonton, AB

$11,590.00

Hamilton, ON

$91,068.00

London, ON

$17,235.00

Ottawa, ON

$6,275.00

Regina, SK Saskatoon, SK Sylvan Lake, AB

$13,333.00 $300.00 $2,500.00

Toronto, ON

$33,826.00

Virtual Walk

$1,905.00

GRAND TOTAL

$196,617.00

Traditional media platforms also played an important role in the success of the virtual event. There were several radio and TV interviews. Deputy Premier and Minister of Health, Christine Elliott, recognized John Malcolmson, SSO’s Executive Director, for the important work that he did to raise awareness, advance patient wellness and support research to find a cure for scleroderma during Scleroderma Awareness Month. In Saskatchewan, Jim Reiter, Minister of Health, designated the month of June 2020 to be “Scleroderma Awareness Month”. Scleroderma Saskatchewan also raised their flag at the Legislative Building for World Scleroderma Day. June night skies were also lit up in Scleroderma blue in cities across the country. A total of 19 landmarks were illuminated in honour of June Awareness and World Scleroderma Day.

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PATIENT SUPPORT UPDATE Scleroderma Atlantic Patient Support Update Scleroderma Atlantic has been keeping busy and connected in these tough times, albeit at a distance!

Since the fall of 2019, scleroderma meet ups have been held on the 3rd Friday of each month.

During the warmer

weather, we’d meet with our lawn chairs and lunches in a park and have a socially distanced visit.

With the colder

weather, we’ve again switched to Zoom meetings. Our meetups have been attended by five to 20 people and have fostered lasting friendships among attendees.

These monthly meetups are an opportunity to come together as a community, check-in with each other and share our experience, strength, and hope as we strive to live well with scleroderma.

Scleroderma Atlantic’s newest project is hosting a monthly webinar series with topics based on survey responses from our support group members. With the support of Canada’s Emergency Community Support Fund, administered through the Community Foundation of Nova Scotia, this online self-care/ care community support education program is designed to promote mental and emotional wellness for persons living with scleroderma and their caregivers.

Topics range from Mindfulness and Meditation to dealing with gastrointestinal challenges. Guest presenters and panelists will cover a wide range of sessions such hands, lungs, fecal incontinence, and hopefulness.

All are welcome to join these free sessions – watch our Facebook page (Scleroderma Atlantic) for registration links.

To access videos of the completed sessions please click here.

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PATIENT SUPPORT UPDATE Scleroderma Alberta and Scleroderma SASK This past September Scleroderma Alberta and Scleroderma SASK partnered together to hold a virtual Education and Support meeting . With the absence of in-person support group meetings as a result of the pandemic, support group leaders; Gillian Little and Tracey Magee, felt there was a strong need for patients to remain connected to each other now more than ever and decided to join together to facilitate a group meeting. The meeting was held on September 30th and was well attended. The education segment of the meeting by Dr. Mohamed Osman from the University of Alberta included information on diagnosing Scleroderma as well as information related to autoimmune and COVID-19.The remainder of the meeting, designated as support and sharing found patients very engaged and it was agreed that a second meeting would be beneficial. The second Education and Support meeting occurred on October 21st with a focus on coping strategies during isolation. Kelsey Ellis, who holds a bachelor's degree with Honours in Human Kinetics and is currently completing her thesis in the Faculty of Kinesiology focusing on exercise for cancer survivors and also has experience working with Scleroderma patients, shared a presentation on Exercise and Scleroderma. We focused on strategies for getting movement throughout the day while being isolated in the home and went through a series of demonstrated exercises that could be done either sitting or standing. We also discussed the importance of exercise for Scleroderma patients and guidelines for well-being. Following the presentation we once again followed up with a support group discussion. It was suggested that we continue on with an additional meeting to learn more coping strategies during the pandemic.

Our next meeting is scheduled for Danielle

PhD

Candidate

Sunday, Dec 6th at 3:00 pm

with

the

Scleroderma

(GMT-7) with guest speaker Danielle Rice presenting.

Patient-centered

Intervention

Network

(SPIN).

Danielle

completing her Clinical Psychology degree at McGill University and is a psychology resident in Ontario. If you would like to register to attend the meeting on Dec 6th please email Tracey at tracey.scleroderma@sasktel.net

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VIRTUAL LEGISLATIVE MEETINGS ALBERTA

During the week of November 23, SC held its Legislative days virtually with the province of Alberta.

A group of

patients and doctor throughout the province along with Scleroderma staff & Board Members participated in over 10 meetings with over 15 MLAâ€™s and their staff. Each meeting was focused on educating MLAâ€™s about Scleroderma and sharing its impact on patients during the pandemic. In addition to these meetings, we were fortunate to meet with Tracey Allard, Minister of Municipal affairs and Deputy Leader of the United Conservative Party, Minister of Culture, Multiculturalism & Status of Women.

The success of these days could not have happened without the Generous support from

are

looking

forward

Legislative

Days

2021

New

Brunswick,

Ontario,

Saskatchewan,

Alberta

and

Parliament Hill.

We left each MPP with 3 key takeaways: 1. The

need

for

the

approval

existing

medications,

that

provide

other

benefits,

but

are

not

licensed

prescribed for use by scleroderma patients.These approvals will help patients living with scleroderma return to work and become more productive members in their community. 2. That we are seeking approval from the Ministry of Health for the following medications: a. Use of the medication PDE5i (commonly known as Viagra) at any dose, for secondary Raynaud's associated with connective tissue disease (CTD) or vasculitis that is not responding to calcium channel blockers and is severe b. Use of PDE5i (Viagra) for the treatment and prevention of digital ulcers in scleroderma or other autoimmune diseases (CTD, vasculitis) 3. There

critical

need

continue

educate

and

raise

awareness

for

this

rare,

chronic,

and

often

fatal

autoimmune disease, so we can put an end to hallway healthcare for those living with scleroderma.

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VIRTUAL LEGISLATIVE MEETINGS QUEENS PARK

During the week of November 16, SSO held its Legislative days virtually. Ontario;

Thunder

Bay,

Sudbury,

Ottawa,

London,

Guelph,

A group of patients and doctors throughout

Kitchener/Waterloo,

Cambridge,

Toronto,

Mississauga,

Hamilton, Milton participated in 20 meetings with MPPâ€™s. Each meeting was focused on educating MPPâ€™s about scleroderma and sharing its impact on patients during the pandemic. In addition to these meetings, we were fortunate to meet with Laurie Scott, Minister of Infrastructure, Doug Downey, Attorney General and Christen Elliot, Minister of Health.

We left each MPP with 3 key takeaways:

1. The

need

for

the

approval

existing

medications,

that

provide

other

benefits,

but

are

not

licensed

critical

need

continue

educate

and

raise

awareness

for

this

rare,

chronic,

and

often

fatal

autoimmune disease, so we can put an end to hallway healthcare for those living with scleroderma.

We look forward to planning legislative days in NB, Saskatchewan, and on Parliament Hill in Ottawa, in 2021.

The success of these days could not have happened without the Generous support from

to the Queens

Park Legislative Day.

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2020 SPIN RECAP ARTICLE The Scleroderma Patient-centered Intervention Network (SPIN), which includes patients, health care providers and researchers, is dedicated to supporting people with scleroderma in Canada and from around the world to live more fulfilling lives. The team recruits participants from almost 50 centres in 8 countries and maintains a large patient cohort of over 1,800 people, to develop, test, and disseminate programs to support people living with scleroderma. Since its inception, SPINâ€™s mission has been to provide people with scleroderma free access to online programs.

Despite

2020

being

incredibly

challenging

year,

SPIN

achieved

major

milestones.

SPIN

launched

online

platform, called SPIN-SHARE, which is dedicated to disseminating tools to patients, once they have been tested. SPINâ€™s first publicly accessible toolkit, SPIN-HAND, which is a home exercise program to improve hand function, is now available via the SPIN-SHARE platform (tools.spinsclero.com). Additionally, in April, SPIN launched the SPIN-COVID-19 Cohort to study mental health concerns during the pandemic. SPIN also conceived and provided the SPIN-CHAT (COVID-19

Home-isolation

Activities

Together)

Program

support

mental

health

during

the

pandemic.

Both

initiatives have been a great success! See below for updates on these and other SPIN projects:

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To support Scleroderma Research please click here.

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SUPPORT THE BLUE RIBBON CAMPAIGN We are excited to announce the launch of our Giving Member Program. This program is designed for people to support

patients

living

with

scleroderma.

(Note:

Patients

are

automatically

members).

are

using

this

holiday

season as a launch pad for this important ongoing program. Becoming a member means that you will be getting behind thousands of patients, caregivers, and physicians, who are already members and ensure that we will continue to reimagine vital resources, deliver education programs, and peer-to-peer support groups, continue to raise critical awareness, and invest in research and finding a cure for scleroderma. At Scleroderma Canada, we are working hard to support all our members, and, we need the help of our community.

There are 5 levels of membership $500/year, $250/year, $100/year, $50/year and $25/year. We will be prominently promoting this new program using our social media channels and highlighting the program on our website.

Please visit www.scleroderma.ca to learn more and here to donate.

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S C L E R O D E R M A

H O L I D A Y

G I F T S

SHOP NOW âž¤

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