WINTER EDITION
Scleroderma Society of Ontario
THE SCLERODERMA REPORTER The Scleroderma Society Of Ontario Newsletter
TABLE OF CONTENTS Message from the Executive Director
2
New SSO Board & Message from President
4
COVID-19 by the Numbers - Dr. Junek
6
June Awareness Recap
7
Scleroderma Conference Report
8
Patient Support Update
9
Virtual Legislative Meetings - Queens Park
1 0
Use of Extracorporeal Photopheresis in
1 1
Scleroderma: A Review - Dr. Osman
Update from our friends at SPIN
1 7
NEW: Join the SSO and Holiday Gift Giving
1 9
Scleroderma Holiday Gifts
2 0
MESSAGE FROM THE EXECUTIVE DIRECTOR 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, the Scleroderma Society of Ontario 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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Here are some highlights from 2020: Ontario Trillium Foundation awarded the SSO with $288,000 over 3 years June Awareness walks went virtual and donations increased by 24%, raising more than $150,000 SSO hosted the first ever Virtual National Conference with more than 150 participants from around the globe SSO received an estate gift of more than $100,000, in memory of a scleroderma patient Christine Elliott met with SSO staff, board members and scleroderma health professionals to discuss patient needs and concerns Virtual advocacy days allowed us to meet with more than 20 MPP’s & staff 6 Support group leaders completed the SPIN support group leader training program Although COVID-19 affected donations in 2020, the SSO was still able to donate more than $50,000 to research
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 won’t be able to gather in groups, but for the SSO, 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.
On behalf of myself and Lacey Battaglio, Manager of Communication & Special Events, 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 Executive Director
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INTRODUCING NEW BOARD MEMBERS
It is with great pleasure that The Scleroderma Society of Ontario announces the appointment of our new President and two new Board Directors.
We would like to congratulate Marc DiRosa as he moves into the role of President of the SSO. Marc has served as a Board Director with our organization since 2016 and has a passion to advocate for those living with scleroderma, to honour the memory of his beloved Aunt Linda. We are thrilled to have Marc at the helm as we move into an exciting year ahead and thank him for his continued dedication to our organization.
Also, joining the SSO as Board Directors are Vanessa Cook and Silvia Petrozza. Both Vanessa and Silvia bring a unique perspective to our organization as young women living with scleroderma and we are honoured to be able to share
their
energy
and
leadership
skills
with
our
members.
Thank
you
to
Vanessa
and
Silvia
for
your
ongoing
commitment to improving the lives of those living with scleroderma and to the SSO.
Stay tuned fro new board member announcements in winter 2021.
MESSAGE FROM OUR PRESIDENT Dear patients, medical experts, supporters and advocates,
As President of the Scleroderma Society of Ontario I am deeply humbled and honoured to chair a remarkable
board
of directors and to expand on the vital work being done by our organization. As with many of our volunteers, the Scleroderma Society of Ontario holds an important place in my heart and my sincere appreciation goes out to the board of directors for this opportunity.
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I would also like to thank outgoing President, Karen Nielsen, for her tireless advocacy and dedicated service to the SSO. Her passion for helping those in the Scleroderma community was evident daily and our organization would not be in the position it is today without her leadership. I would also like to thank outgoing board member Stephanie Kulakowsky for her efforts throughout the years and am excited to welcome our newest members Silvia Petrozza and Vanessa Cook.
Having been with this organization since 2016 there has been a common refrain amongst our patients and families alike
that
they
had
no
idea
what
scleroderma
was
until
their
lives
were
forever
changed
by
the
disease.
My
introduction to this rare disease was no different. When my Aunt Linda was first diagnosed, our family had no idea what the disease was or the severe impact it would have on her life. There were no networks for patient support, there were no organizations assisting those with the disease, and there were limited resources for best practices on how to live with the disease. My aunt fought hard and lived a meaningful life dedicated to her family and serving others until she was eventually taken from us in 2011. As tragic and heartbreaking as this event was, the Scleroderma Society
of
Ontario
has
become
a
place
where
my
family
can
come
together
around
a
shared
been.
We
have
purpose
while
honouring the life and memory of our beloved Linda.
Fast
forward
to
today
and
the
Scleroderma
Society
is
as
strong
as
it
has
ever
patient
support
networks in cities across the province; our walks and events are raising funds and awareness; we are being heard in the offices and hallways at the provincial legislature; and we are funding necessary research that will assist our patients as we strive for a cure. While these are all commendable achievements, there is still much work to be done.
As President, I remain committed to the mandate of our organization and to collaborating with our team and network of partners to advance the scleroderma cause. We will work diligently to enhance our voice, to advance our agenda and to continue striving for a cure. I hope you will join us!
Yours truly,
Marc DiRosa, President
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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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JUNE AWARENESS RECAP The Scleroderma Society of Ontario was proud to be a part of Scleroderma Canada’s successful
efforts
adapting
and
evolving
the
approach
to
delivering
critical
June
Awareness activities during the early stages of the COVID-19 global pandemic. Our 2020 Walk became a virtual event exclusively. Patients, caregivers, friends, and family members were able to participate in 4 existing walks in Ontario or Create-Your-OwnWalk
and
get
awareness. group
involved
Donations
walks
-
a
in
the
way
increased
truly
that
by
worked
24%
unprecedented
best
for
year-over-year
them
to
despite
accomplishment
thanks
raise
not to
funds
hosting our
and
large
incredible
Scleroderma community. Participants leveraged their social media platforms to get the word out as we’ve never seen before. In addition to incredible participant support and
efforts,
we
are
grateful
for
the
unwavering
support
from
David
and
Maureen
Sauve for matching all walks, up to $25,000. These donations played a critical role in the success of the virtual event during such an uncertain time.
Silvia Petrozza
Larché Family
Team Frog
John Malcolmson
Team Frog
Larché Family
Sanique Whyte and Curtis Campbell
Team Frog
We are also excited to celebrate the SSO’s very own Executive Director, John Malcolmson for his incredible personal display of commitment to the cause. John dedicated 60 days to walking 1000-miles for scleroderma - - 1000-miles is equivalent
to
personally
raised
38
marathons, an
or
astonishing
walking
from
$53,000
Hamilton
including
a
to
Winnipeg,
generous
MB,
match
for
or
Yarmouth,
funds
raised
NS
or
Orlando,
up
to
$25,000
FL!
John
from
the
Civiero Family. John’s efforts brought awareness to scleroderma through social media, local radio, and television.
We are excited to continue to build our virtual event platform and respond to the needs of our participants, donors, and community of scleroderma champions.
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SCLERODERMA CONFERENCE UPDATE The
Scleroderma
Society
of
Ontario
was
honoured
to
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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PATIENT SUPPORT UPDATE Hamilton Patient Forum This year the Hamilton Scleroderma Group and the Scleroderma Society of Ontario presented our 6th annual Patient Education Forum, however, this yearâ&#x20AC;&#x2122;s event was held virtually due to COVID-19 restrictions and to maintain the safety of our participants.
Our first ever Virtual Patient Education Forum took place on October 27, 2020 from 6pm â&#x20AC;&#x201C; 9pm. The event was hosted on a Zoom platform and there was no cost for participation.
More than 85 participants registered for our first ever Virtual Patient Education Forum, to hear from 6 different speakers. The SSO partnered with McMaster University and the Hamilton Scleroderma Group once again, to deliver an incredibly successful event! We also offered a COVID-19 discussion panel for our participants, allowing them to ask COVID-19 related questions to our speakers as, it relates to their scleroderma.
London Friendship Group The Scleroderma Society of Ontario was honored to receive grant funding from the
Ontario
Trillium
Foundation
for
our
London
Friendship/Support
Group
Program.
We were fortunate to have an existing support group in the London area which has long been run by volunteer leader and walk coordinator, Bea Kiekens. The SSO
applauds
Bea
for
her
many
years
of
dedicated
service
to
her
group
members, the London scleroderma community and the SSO and though she has transitioned out of this role, we are thrilled that she will continue to join us as a group participant.
Meeting
virtually
on
the
last
Thursday
of
each
month,
the
London
Friendship/Support Group project aims to reduce loneliness and increase social connections for people living with scleroderma.
Lead by SSO employees, this peer-to-peer discussion group hopes over time, to strengthen community
and
expand
outreach
to
our
those
existing who
membership
have
been
most
and
offer
training,
marginalized
and
and
socially
isolated by their scleroderma.
If you or someone you know is interested in joining this meeting, please contact us to register at 1-888-776-7776 or by email at info@sclerodermaontario.ca.
The success of these days could not have happened without the Generous support from
to the Hamilton
Patient education night and the Ontario Trillium Foundation.
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VIRTUAL LEGISLATIVE MEETINGS QUEENS PARK
During
the
Legislative doctors
week days
of
virtually.
throughout
Ottawa,
A
Ontario;
London,
Cambridge,
November
Toronto,
16,
group
SSO of
Thunder
Guelph,
held
patients Bay,
its and
Sudbury,
Kitchener/Waterloo,
Mississauga,
Hamilton,
Milton
participated in 20 meetings with MPPâ&#x20AC;&#x2122;s. Each meeting was
focused
on
educating
MPPâ&#x20AC;&#x2122;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
of
existing
medications,
that
provide
other
benefits,
but
are
not
licensed
to
be
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
is
a
critical
need
to
continue
to
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.
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&#x20AC;&#x2122;s mission has been to provide people with scleroderma free access to online programs.
Despite
2020
being
an
incredibly
challenging
year,
SPIN
achieved
major
milestones.
SPIN
launched
an
online
platform, called SPIN-SHARE, which is dedicated to disseminating tools to patients, once they have been tested. SPINâ&#x20AC;&#x2122;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
to
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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JOIN THE SSO'S NEW GIVING MEMBER PROGRAM 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).
We
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 the Scleroderma Society of Ontario, we are working hard to support all our members, and, we need the help of our community.
There
are
4
levels
of
membership
$500/year,
$250/year,
$100/year,
and
$50/year.
We
will
be
prominently
promoting this new program using our social media channels and highlighting the program on our website.
BECOME A GIVING MEMEBER
CLICK HERE
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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 â&#x17E;¤
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