SCLERODERMA SOCIETY OF CANADA | FALL/WINTER 2015
FALL 2015
SSC JOINS THE FIGHT ADVOCATING AGAINST A ONE-SIZE-FITS-ALL APPROACH TO PAH TREATMENT
CHILDREN’S LOVE HEARTWARMING STORIES THAT INSPIRE US
DECREASING PAINFUL INFLAMMATION
NEW APPROACH TO
NEW THERAPIES UNDERSTANDING OF THE PATHOPHYSIOLOGY OF SCLERODERMA
ELIMINATING POTENTIAL FOOD ALLERGENS FROM YOUR DIET
TOLL FREE 1-866-279-0632 | INFO@SCLERODERMACANADA.CA
PRESIDENT’S
CONTENTS 3 NEW APPROACH TO NEW THERAPIES 6 SCC JOINS THE FIGHT
MESSAGE
The Power of Advocacy
Building critical support across Canada When I was little, I thought that my local library
8 CHILDREN’S LOVE
contained every book in the world. I believed that if I just knew how to work the Dewey Decimal
9 KISS ME BEFORE I DIE
System, I could access any book ever published in a minute or two. It’s easy to think of our health-
11 INSPIRED BY MOM
care system the same way, as if every screening, treatment, drug, therapy and support is available to any patient who needs it at any time.
12 EVERESTING THE KOOTENAY PASS
Sadly, that’s not the case. We need to work to make available many of the interventions people
13 AN AMAZING DAD
need when they are living with scleroderma. We need to work to make sure that our healthcare professionals have the information they need to deliver the best care.
16 UNDERSTANDING CANNABIS
That work is in the form of advocacy, a vitally important aspect of the Scleroderma Society of Canada’s mission, and in the coming months, advocacy will be an even greater focus. We will show you how you can become an ambassador for the
18 2015 JUNE AWARENESS &
scleroderma community. We will ask for your help in raising awareness of the disease,
EVENTS
being part of our media strategy, telling your story, participating in events or contribut-
23 NUTRITION
ing to efforts focused on legislative or policy change. This is how we will build the critical mass of knowledge and support across Canada that will help elevate everything from research funding, to regulatory approvals, to
26 CONCEPT TO REALITY
drug access. It’s a big job and we’ll need your help. Please watch for information on our Ambassador Program. It’s going to make a big difference in so many ways.
28 AWARENESS MONTH 31 RESEARCH STUDY
Of course, the introduction of any new initiative like our Ambassador Program is only possible because of the strength of activities like Scleroderma Awareness Month and our amazing walk events in June. I want to thank all of the volunteers, participants, sponsors and staff from across the country who made such strong commitments during our highest-profile month. You should be proud of your accomplishments, as I am proud to be part of this organization. We are making great progress on many fronts, not the least of which is research. In this issue of SCLERODERMAvoice we look at some of the research projects our society is supporting. This work is paying off in greater understanding, new treatments and slow but relentless progress toward finding a cure. Thank you for everything you do to make that progress possible. Yours very truly,
Maureen Sauvé
President, Scleroderma Society of Canada
Scleroderma Voice Fall 2015 | 2
RESEARCH
Your support is helping make research possible. Research is our only hope please donate
NEWAPROACH
TO NEW THERAPIES
Understanding of the pathophysiology of scleroderma BY DR. JEAN-LUC SENÉCAL, MD, FRCPC
Animal models are essential for a better understanding of the mechanisms underlying human scleroderma (Scl) and to speed up the discovery of new treatments. Scleroderma Voice Fall 2015 | 3
RESEARCH
H
owever, none of the cur-
shell, we immunologically induce Scl in
We express our deep gratitude to the
rent models reproduces
mice. With the financial support of Sclero-
members of SSO, SSC and SSQ for their
all of the pathophysiologi-
derma Ontario (SSO), Scleroderma Can-
generous support.
cal features of human Scl,
ada (SSC) and Sclérodermie Québec
i.e. autoimmunity, inflam-
(SSQ), we have made major progress
Dr. Jean-Luc Senécal, MD, FRCPC, is
mation, vascular involve-
in the development of this new model,
Professor of Medicine and Scleroderma
ment and fibrosis. As a consequence,
that reproduces all four cardinal features
Research Chair, University of Montreal
attempts to translate potential treat-
of human Scl. Once the model is fully vali-
School of Medicine and Director, Lab-
ment advances from current models to
dated, we will treat the mice using novel
oratory for Research in Autoimmunity,
patients have been disappointing.
therapeutic approaches to determine
Research Center of Centre Hospitalier
whether Scl can be stopped, reversed
de l’Université de Montréal .
The research team spearheaded by Dr.
and even prevented. If this works, it will
Marika Sarfati, MD, PhD, and myself, is
provide a very strong scientific rationale
developing a new model of Scl. In a nut-
for therapeutic trials in patients with Scl.
PROGRAMPROVIDES
MULTIDISCIPLINARY CARE
BY DR. SINDHU JOHNSON, MD, PHD, FRCPC
T
he Toronto Scleroderma Program is a health-care network comprised of three academic hospitals affiliated with the University of Toronto. The Program provides
multidisciplinary care, medical education and research in the scleroderma spectrum of diseases including systemic sclerosis, eosinophilic fasciitis, Raynaud’s phenomenon, mixed connective tissue disease and morphea. It is actively engaged in both translational and clinical research with the goals of improving understanding of the disease, finding better treatments, and improving patient’s lives. The Program’s team investigates: • development of classification criteria for scleroderma subsets • use of autologous stem cells for healing scleroderma ulcers
The Toronto Scleroderma Program works
Dr. Sindhu Johnson, MD, PhD, FRCPC, is
closely with the University Health Network
Director, Toronto Scleroderma Program,
Pulmonary Hypertension Program, Intersti-
Rheumatology, Department of Medicine,
tial Lung Disease Clinic and the Toronto
Institute of Health Policy, Management
Lung Transplant Program. The Program
and Evaluation
also provides advanced training to
• improving survival after lung tranplant
graduate students, international rheuma-
University Health Network Pulmonary
• use of novel medications for treatment
tologists and allied health professionals
Hypertension Programme, University of
who wish to develop expertise in the area.
Toronto.
of scleroderma
Scleroderma Voice Fall 2015 | 4
RESEARCH
INVESTIGATING
T
GENE MAKERS
he Scleroderma Associa-
suppressed in specific tissues, using
tion of British Columbia is a
the state of the art equipment at BC
Community Partner sup-
Genome. The current study will focus on
porting a Proof of Concept
cell tissues, providing specific informa-
Study to investigate specific
tion to hypothesise therapeutic targets
gene markers, on three cell
to combat scleroderma.
types, skin, circulating immune and mononuclear, to identify which genes
This two-year program will create a firm
are active and non-active in sclero-
foundation for the development of an
derma patients. Dr. James Dunne, at
intensive genome research project
the Scleroderma Clinic, is the research
directed at methods to improve treat-
program lead in collaboration with BC
ment of scleroderma, with the expec-
Genome. The whole gene sequencing
tation of receiving future support from
will identify genes that are active or
research funding agencies.
The Canadian Scleroderma Research Group he has developed the Rheumatology
research, the group currently focuses its
Jewish General Hospital of Montreal
efforts to develop more specific classifi-
program, created and directed the
cation criteria for the diagnosis of sclero-
Rheumatic Disease Unit at the Jewish
derma; create subsets of disease using,
Rehabilitation Hospital, and led Sclero-
among other things, autoantibody
derma Clinic McGill University.
profiles; and develop an activity index of the disease and an index of damage
The ultimate goal that has set the group
caused by scleroderma.
is to increase research capacity in
I
n 2003, at the instigation of Dr. Murray Baron , a group of seventeen rheumatologists from across Canada met and agreed on the need to come together to improve the treatment of patients with scleroderma.
Dr. Baron is a rheumatologist who has over 20 years of clinical experience and organizational progress. Since 1982
scleroderma in Canada by providing
Group members also plan themselves
a multidisciplinary and intersectoral re-
actively to the transfer and exchange of
search team whose work is likely to have
knowledge among key stakeholders, the
significant impact. Group members are
scientific community, the public and pol-
working with scientists from inside and
icy makers. They have developed links
outside the field of scleroderma (main-
with well-known patient groups such
ly rheumatologists, cardiologists, lung
as the Canadian Scleroderma Society
specialists, gastroenterologists, derma-
and Quebec to involve patients in the
tologists, dentists, psychologists, and
process of determining priorities and
epidemiologists) and train new scientists
disseminating knowledge. i
in relevant scleroderma research. With regard to the relevant scleroderma
Source: canadian-scleroderma-research-group.ca/thecsrg---le-grcs.html
Scleroderma Voice Fall 2015 | 5
CAMPAIGN
STORY
SSCJOINSTHEFIGHT Advocating against a one-size-fits-all approach to PAH treatment
I
n March 2015, the pulmonary
er treatment of PAH. The CADTH report
applied to some existing and newer
arterial hypertension (PAH) com-
specifically recommends an initial trial
PAH treatment options, like Opsumit
munity received disturbing news
with phosphodiesterase type-5 (PDE-5)
(macitentan). In January 2015, Opsumit
when the Canadian Agency for
inhibitors for newly-diagnosed adult
became the first example of how the
Drugs and Technologies in Health
patients assessed in Functional Classes
CADTH recommendation for a stepped
(CADTH) released its Therapeutic
II or III. If a patient does not respond ad-
approach to initial therapy can be
Review Recommendation Report for
equately to this therapy, only then does
applied to restrict access to treatment
Drugs for PAH. The potential impact of
the report recommend other drugs be
for adult PAH patients. Following CADTH,
this report is of the outmost importance
added.
the Common Drug Review recommend-
to the lives of PAH patients as it seeks
ed that Opsumit be publicly funded
to severely restrict physicians’ ability
The PAH community is very concerned
for the long-term treatment of PAH to
at diagnosis to exercise the individual
that this suboptimal stepped approach
reduce morbidity in patients with Func-
clinical judgment essential to the prop-
to initial PAH therapy is already being
tional Class II or III, but only after a trial
Scleroderma Voice Fall 2015 | 6
CAMPAIGN
STORY SCLERODERMA SOCIETY JOINS THE FIGHT
immediate, publicly funded access to
As our community knows all too well,
PAH medications as prescribed by their
PAH COMMUNITY TAKES ACTION
scleroderma and PAH often go hand-in-
physicians who are experts in their
hand. Virtually all persons with sclero-
disease.
Since then, PHA Canada has launched
derma have some loss of lung function
a critical advocacy campaign to re-
in the forms of pulmonary fibrosis and
The urgent task at hand is to lend our
mind our provincial and territorial gov-
pulmonary hypertension. Unfortunate-
voices to these advocacy efforts and
ernments that lives could be at risk if
ly, those living with scleroderma have
have as many people as possible
these recommendations are heeded. It
an increased risk of developing PAH
deliver this “ask,” urging government de-
is essential to the well-being of all those
because of the significant fibrosis of
cision-makers to put the lives of Cana-
affected by PAH that decision-makers
their lungs, which can in turn reduce
dian PAH patients and families first by
understand that a one-size-fits-all ap-
the blood oxygen levels and cause a
ensuring their physicians have a choice
proach to managing this rare disease
reflex of increased blood pressure in the
of treatment for their patients.
will not work. PHA Canada is now deep-
pulmonary arteries.
with a PDE-5 inhibitor has resulted in an inadequate response.
ly engaged in efforts to ensure that all
any and all Health Canada-approved
Everyone can help. Everyone is need-
Health Canada-approved PAH medi-
SSC joins PHA Canada in their concern
ed. Together, we can and WILL make a
cations are accessible to all Canadian
that the recently released CADTH and
difference!
patients – at diagnosis and beyond.
CDR recommendations that would restrict PAH physicians’ ability to exercise
VISIT ADVOCACY
Various tactics are being implemented
the individualized clinical judgement
SSC has launched an Advocacy
to ensure that the PAH community’s
that ensures PAH patients get the treat-
page on our website to enable our
voice is heard loud and clear. PAH
ment they need, right from diagnosis.
community to get involved in this
patients and caregivers from across
Our request of government is clear and
important campaign. i
the country have generously agreed to
simple: All PAH patients should have
share their stories and experiences with key government influencers and decision-makers. Their efforts have resulted in meetings with local politicians to educate them about the issue and re-
WANT TO HELP? IT’S EASY!
quest their support in applying pressure on the provincial Health Minister. Some
Visit PHA Canada’s Advocacy page at phacanada.com for easy to use
have amplified that pressure by telling
resources and more information on how you can get involved. Together, we
their stories to local journalists which
can and will make a difference!
has generated powerful news stories, on television and in local community newspapers. Social media is extending
Show your support by emailing your local and provincial
the reach of this work.
government representative by using this easy-to-use tool
These efforts have been very successful thus far, with several influential elected officials now not only aware of PAH and
Find us at PHACanada and show your support by liking
the impact these recommendations
and sharing
could have on Canadians, but willing to lend their support to the effort. But the fight has just begun – and more support is needed to ensure that the
Follow us @PHACanada and show your support by favou-
provinces and territories do not im-
riting and retweeting
plement these potentially life-limiting recommendations.
Scleroderma Voice Fall 2015 | 7
Children’s Love HEARTWARMING STORIES THAT INSPIRE US
Across Canada, the children of parents battling scleroderma and late parents are doing extraordinary things to bring awareness to this disease. Their hard work, personal drive and selfless commitments are heartwarming and inspiring. SSC wanted to share just a few of their stories. The following pages illustrate the love children have for their parents – their unwavering support for our cause and how they are promoting the need to raise funds for scleroderma research. Scleroderma Voice Fall 2015 | 8
PERSONAL
STORY
Kiss Me Before I Die A MOTHER MEETS HER FAVOURITE ROCK STAR BY LAURA SMIRNOV
Photo: Anna-Marie Kussiak Smirnov Smirnov finally fulfills dream of meeting Aerosmith’s lead singer, Tyler, who holds up the poster she waved at him during a concert in the city.
O
ur mother had a pas-
the song on the radio and, chances
or even our country if it meant experi-
sion for music. She
were, it was Aerosmith.
encing a particular band. Most likely if
was always dancing
you knew our mother, you have been to
and singing, and it
Music was such a big part of her life. It
some sort of a music event with her. Our
didn’t matter if she
made her feel alive and it kept her go-
mother was always making amazing
was driving in the car,
ing, especially during her 12-year battle
memories with us.
at home vacuuming or just dancing in
with Systemic Sclerosis. She would take
the living room with her kids. She would
us to almost every concert she could.
The night of the Aerosmith concert in
constantly quiz us on who was singing
It didn’t matter if it was in our province
2004 was one of the best concert mem-
Scleroderma Voice Fall 2015 | 9
PERSONAL
STORY
Phil Hossack/ Winnipeg Free Press Smirnov (centre) is surrounded by (from left) Lindsay Smirnov, Annette Ungurain, Kailyn Smith and Laura Smirnov after meeting Tyler.
ories we made. Aerosmith was coming
of her idols. After waiting in the lobby for
a kiss on the cheek as well! My Mom
to Winnipeg, and our mom purchased
a few minutes the sliding doors opened
asked if he would call Lindsay on the
tickets for a group of us to attend. She
and in walked Steven Tyler.
phone and talk to her, as she didn’t join
made a big poster that she brought with her that said “KISS ME BEFORE I DIE STEVE.”
in on our fiasco. He agreed and called He immediately came over to us and
my sister. “Lindsay Baby, why aren’t you
said hello. He asked her why she was in
here right now?” I heard him say. If we
After the amazing concert, my sister
a wheelchair and she told him that she
didn’t have the pictures as proof, I would
Lindsay and her boyfriend Chris went
had Scleroderma and began to explain
have thought this was all just a dream.
home, but my mom and I weren’t ready
the disease to him. He listened intently as
for the night to be over. We were in the
she spoke. He told us that he had seen
Nothing was ever impossible with our
parking lot about to head home when
the poster she made and he just wanted
mother. She would make every experi-
she had the idea to go and try to find
to leap out into the audience and give
ence fun and enjoyable. She had a pos-
the band (as she assumed they would
her a kiss. He then asked for her permis-
itive outlook on life and believed that we
be staying in a local hotel for the night).
sion to sit on her lap and was very gentle
could do anything if we put our mind to
She was confident we would find them.
and considerate. He inquired if he was
it. She never let anything hold her back,
There wasn’t a doubt in her mind. On
hurting her or not and when she said
no obstacle, not even her disease. She
a gut instinct we drove to the Fairmont
“no” he gave her a great big kiss.
was strong and beautiful and kind. She
hotel. By this point our Mom needed her
believed that anything was achievable
wheelchair as her body was fatigued,
He patiently spoke with us, took multiple
in life and to always have fun. And to
but she was still determined to meet one
pictures and even ended up giving me
always dance to the music. i
Scleroderma Voice Fall 2015 | 10
PERSONAL
STORY
I
n 1985 when Mom (Dorothy Duke)
Dorothy Duke and Angie O’Brien
was diagnosed with systemic scleroderma, our family did not foresee the seriousness of this dreaded disease. Fast forward 29 years and we had become all too familiar with this disease
and its many faces. Since Mom’s diagnosis, she had encountered many hardships. In 2005, it was discovered that Mom had autoimmune hepatitis, along with primary biliary cirrhosis. At that time, a doctor gave her five years to live. In 2006, after her second bleed from esophageal varices, Mom was told that she would only have two years to live if she did not receive a liver transplant. In 2014, we were informed that a liver transplant was not a viable option because scleroderma had attacked her lungs and she had developed pulmonary hypertension. Despite it all, Mom continued to defy the odds and she fought the biggest fight of her life. Mom encountered frequent bouts of hepatic encephalopathy and she had ascites, but she also had her faith and the will to fight. On December
Inspired by Mom Remembering Dorothy Duke in St. John’s, NL BY ANGIE O’BRIEN
29, 2014, however, Mom lost the fight and we lost the most precious wife, mother, grandmother, sister, aunt and friend. Mom was the strongest, most courageous woman that I have known. It is so difficult to watch someone so close suffer so much because of this ugly disease, but our family, believe it or not, got our strength from Mom. If she was strong enough to go through it, we were strong enough to stand beside her. This hateful disease took my best friend, my
Angie O’Brien was inspired to start a Walk in St. John’s, NL after scleroderma took her beautiful mother, Dorothy Duke, away
precious mother, and it is devastating. We need to raise awareness, raise funds
from her on December 29, 2014. The tentative date for Angie’s
and find a cure for this horrific disease.
Walk is Sunday, June 26, 2016.
ma, but it didn’t have her. Now, she no
I used to say that Mom had scleroderlonger has scleroderma, but sadly, it did take her. i
Scleroderma Voice Fall 2015 | 11
PERSONAL
STORY
EVERESTING the KOOTENAY PASS A hard ride for an even harder disease “For this fundraiser, as I have witnessed my mom’s suffering due to scleroderma, it seemed appropriate to choose only the most difficult endurance challenge I could imagine. Among endurance sports, road cycling has a unique fascination with suffering – it borders on a mystique. But whatever self-inflicted pain we might experience on the bike, it pales in comparison to the suffering of those with scleroderma.” The initial fundraising goal for this event was $8, 848, or a dollar for every meter they planned to climb. All funds go directly to the Scleroderma Joan Frederick and Jaime Frederick
O
Society of Canada. The idea was to be the first cyclists to
n Saturday, July 4 Jaime Frederick and Brian Marsh rode what is known in cycling as a double-century (more than 200
miles, or 320 kilometres), including eight trips up the Kootenay Pass in the Selkirk Mountains of British Columbia. They cycled to raise funds for scleroderma
“Everest” the West side of Kootenay Pass in British Columbia, the highest all-weather pass in the country, with its summit at 1,774 metres. Everesting is a relatively new phenomenon in road cycling and, probably because it is quite difficult, it has not yet caught on widely in Canada. The concept, however, is simple: one climbs the same elevation as the summit of Mt. Everest (8,848m)
research in hopes to find a cure.
in a single ride. For more information on
Jaime’s mother has suffered from
http://www.everesting.cc/the-rules/
scleroderma for approximately 15 years. Jaime cycled as a tribute to her strength and her long, slow, painful struggle with this illness.
Scleroderma Voice Fall 2015 | 12
Everesting, you can see the rules here:
The rules for Everesting dictate that cyclists must also ride the descents, so this effectively means completing
a double-century including 8,848m of climbing. The cyclists expected that this will require a minimum of 16 hours riding time, including eight trips up (and down) one of the toughest segments of road in the country. Jaime raised over $6,000 for his ride, which took longer than anticipated (17 hours) with high temperatures (41C on the road) during the middle of the day. Nevertheless, the two riders are happy to say that they did it! But not alone. They were fortunate to have a large crew of supporters who helped them through a very difficult day. They would like to thank the Scleroderma Society of Canada in setting up the fundraising page and helping to get the word out. i Jaime Frederick and Brian Marsh
PERSONAL
STORY
AN AMAZING
Dad
Toronto walk not just in honor of one man, but for all BY JENNY AND MELISSA HATCHER
Our Dad was an outgoing, energetic and very active man. Whether he was biking around the city, outside fixing the deck or in the kitchen utilizing his exemplary culinary skills, he did it with happiness and a zest for life itself.
H
e liked to keep busy and
friends. He was a happy, healthy man
and started to sleep longer and take
learn something new each
who very seldom became ill and even
naps during the day. This eventually
day. He seemed to have a
if he did, you would never hear a word
progressed on to noticeable weight loss
wealth of knowledge at his
of complaint. He always had a positive
and a change in his physical strength.
fingertips. There was always
outlook on life, even when faced with the
He continued to work and carry on his
some random fun fact to
diagnosis and ensuing life threatening
normal activities but the fatigue and
share, leaving you to think “how did you
battle with scleroderma. We definitely
exhaustion proved to be too much by
ever know that?” He was a self-taught Mr.
had the most loving and truly outstand-
the end of September. He, at that time,
Fix It, who eagerly shared his knowledge
ing Dad. Any man can be a father, but
noticed some swelling in his hands and
and skills with others.
it takes a special one to be a Dad and
ankles, the feeling of increasingly painful
that was, and will always be, our Dad.
ankles as well as sensations of tightness
Family was paramount in our Dad’s life.
in his face, neck and throat areas.
He always made the effort as well as
It took our family a long while to piece
Our Dad’s GP had retired and the new
created the time to be with the ones he
together and come to an understand-
one had no clue as to what was wrong.
loved. He shone brightly at any party –
ing of what was happening to our Dad.
Thankfully our Mom, a retired RN, was
whether hosting barbecues, surprise par-
At first, in late August, 2010, he began
able to have our Dad seen by our
ties or just little get-togethers on the deck.
to appear pale with dark circles under
incredible GP. After many tests to help
He loved to be surrounded by family and
both eyes. He felt more tired than usual
confirm what they both suspected was
Scleroderma Voice Fall 2015 | 13
PERSONAL
STORY Dad
the outlook was hopeful. Unfortunately,
weekend available in June was Father’s
the disease progressed far too rapidly in
Day weekend which was fitting for us. We
a very short time. His lungs had become
partnered with the SSO to ensure there
compromised with Pulmonary Fibrosis.
was continuity between our Walk and all
Although he was responding well to the
other walks – provincially and nationally.
various medications and treatments, in less than five months after being diag-
We reached out to personal and profes-
nosed, we unexpectedly lost our Dad to
sional contacts to secure food donations
scleroderma on May 10, 2011.
and raffle prizes. In our first year, we raised over $8,000 and immediately knew we
From the moment our Dad became an
had to make this a tradition. In our sec-
outpatient under the care of Dr. Lee and
ond year, we were able to work with the
the Scleroderma Clinic Team at Mount Si-
CN Tower. On the night of our walk, it was
nai Hospital, his life as well as ours seemed
lit up in blue and white (Scleroderma
to become calmer.There was a plan in
colours!) with an eight-minute light show
place that encompassed the normal as
at the top of every hour.
well as the urgent times, the short term as well as the long term. Our lives began to
Our walk is not just in honour of our Dad,
take on a much needed routine and we
it’s in honour of those suffering from this
scleroderma, in early November 2010
began to feel safe and secure. We were no
disease; those who have been taken
they began the process of obtaining an
longer alone in the battle against a most
from this disease; and those who are sup-
appointment with a rheumatologist.
horrendous disease – the Clinic had our
porters eager to raise awareness. Each
backs 24/7. We can never speak highly
year our participant list grows and al-
This was a very long and frustrating
enough about the Clinic, nor ever properly
though we did not have a walk this past
process – not only due to the lengthy
thank all the people for the outstanding
June, we are determined to host the walk
waiting time to be seen, but to be without
care they provided to our Dad as well as
each and every year until there comes a
a plan of treatment which needed to be
our family. It saddened our hearts deeply
day that this disease has a cure.
initiated as soon as possible. Only due to
to learn of the passing of Dr. Lee, but we
our Mom’s constant persistence was she
know each and every one of his succes-
Over the past four years, we’ve had many
finally able to speak to the rheumatolo-
sors will strive to continue the tradition of
sponsors and volunteers. We’d like to take
gist, who, when made aware of the initial
providing exemplary care and support.
this time to thank them for their continuous
diagnosis, immediately made a referral to Mount Sinai Hospital’s Scleroderma Clinic.
support and helping us to raise awareness Our walk started in June 2012. After our
and funds for scleroderma research. We
Dad passed in May 2011, we caught
will be back next year, June 2016 and are
On December 23, 2010 our Dad was
wind of a walk happening in Hamilton
hopeful to count on our past sponsors’
examined by Dr. Peter Lee (Director of
in June 2011. With only a few weeks until
support as well as new sponsors to help us
the clinic) and the diagnosis of severe
the walk, we pulled together a team to
achieve our goal of $25,000
systemic scleroderma was confirmed. The
raise funds and attend the walk. Our
plan of treatment was finally initiated. It
team was comprised of family and close
The tentative date for the Toronto Walk
was determined that our Dad was in his
friends, calling ourselves “Team Petey.”
will be Saturday, June 18, 2016.
third year of scleroderma as Raynaud’s
We were able to collect over $4,000. We
had appeared three years previously but
observed and learned a lot from the
We hope that by partnering with the
seemed to have remained at bay since
Hamilton walk. Our main concern/ques-
SSO, we together – will make each Walk
then causing minimal problems.
tion was “Why isn’t there a Toronto walk?”
bigger and better than the last. Ideally,
A very interesting fact is our Dad’s Mother
After learning there had never been a
would bump us up to the next level of
had localized scleroderma. We had been
walk in Toronto, my sister and I knew it
fundraising that is needed. Hopefully
informed the disease was NOT genetic
was up to us to bring this walk to our city
in the near future, a massive walk in
and that it is more common in females
and help raise awareness for this disease.
Toronto will be held where thousands of
over 30. Dr Lee informed Dad it would be
We worked with the City of Toronto to
participants are involved and scleroder-
a tough battle against scleroderma, but
book a park – ironically enough, the only
ma awareness is spread to many. i
having a national sponsor (ie. a bank)
Scleroderma Voice Fall 2015 | 14
Scleroderma Society of Canada BOARD OF DIRECTORS PRESIDENT Maureen Worron Sauvé - Ontario VICE-PRESIDENT Michelle Richard - Nova Scotia PAST PRESIDENT Marion Pacy - Manitoba TREASURER Catherine Fortune - Ontario
SECRETARY Helen Goerzen - Manitoba
EXECUTIVE DIRECTOR Anna McCusker
DIRECTORS Janet Lewis Anderson - Manitoba Mary Beth Clark - Nova Scotia Steve Kulakowsky - Ontario Yvon Leveille - Quebec John Malcolmson - Ontario Melissa Patton - British Columbia
Scleroderma Society of Canada 41 King William Street, Suite 203 Hamilton, Ontario L8R 1A2 Toll Free: 1-866-279-0632 Email: info@sclerodermacanada.ca
Scleroderma Society of Canada REGIONAL DIVISIONS
Scleroderma Association of British Columbia 604-984-9425 rq.sabc@telus.net
Scleroderma Association of Saskatchewan Louise Goulet 306-584-1950 louise.goulet@sasktel.net
Scleroderma Association of Manitoba Marion Pacy 204-417-6017 sclerodermamb@gmail.com
Scleroderma Society of Nova Scotia Mary Beth Clark 902-423-3942 info@sclerodermanovascotia.ca
Sclerodermie Quebec Normand Ricard 514-990-6789 info@sclerodermie.ca
Scleroderma Society of Ontario Anna McCusker 905-544-0343 info@sclerodermaontario.ca
Scleroderma Voice Fall 2015 | 15
Proud Supporter of the Scleroderma Society of Canada
UNDERSTANDING
CANNABIS
An Adjunct Therapy At The Peace Naturals Project, we are committed to providing our clients with a standardized quality of medicinal Cannabis and a gold standard in Client Care.
WE
understand that each of our clients have varying
needs, suffer from different symptoms that they are looking to relieve and require different levels of support. Our Client Care Representatives are provided with the knowledge necessary to provide an unprecedented level
Our methods involve starting with the best medicinal Cannabis varieties and genetics available worldwide, analyzing them in our own in-house research and development environment and improving them with the feedback we receive from our valued customers. This proven formula for success helps us to best determine how to help our clients with their individual medical needs. To us, medicinal Cannabis is an adjunct therapy that is a key component to making lives a little bit better.
of client support throughout your entire process; from the first call for information, to helping you work with your doctor, to helping you choose the varieties of medicine that best suit your individual needs. It is our promise to our clients that we will never rush anyone through the process and that we will always be here to help and guide and collect feedback in an effort to be a friend first.
Interested in learning more? Our Client Care Representatives are here to
Scleroderma Conference 2015
BE SURE TO VISIT US AT OUR BOOTH
ON SEPTEMBER 18-19 THE PLANT
THE ACTIVE INGREDIENTS
GETTING TO CONSISTENCY
Cannabis, properly Cannabis Sativa-L, can
Cannabis contains many active ingredients
At Peace Naturals we have selected our chosen
be found all over the world. It is known
called Cannabinoids. The Cannabinoids most
varieties to represent a wide range of active
to have many different varieties, each
well known for their medical benefits are THC
ingredient ratios in order to accommodate
with unique genetic traits. These varieties
and CBD: THC is used to relieve a wide range
differing client needs. With our commitment
originate from different geographic locations
of physical and psychological symptoms due
to quality control and leading edge cultivation
and varying cultivation conditions.
to its energizing effects and anti-inflammatory
practices, along with a talented group of
actions, whereas CBD is anti-psychoactive and
plant care specialists, we are able to grow
ITS PROPERTIES
is well known for its sedative properties and
our varieties with consistent profiles so that
ability to combat pain. Cannabinoids bind to
our clients receive the same benefits each
There are two main medical sub-species
specific receptors found throughout our nervous
time they consume their variety of choice.
of Cannabis known as Cannabis Indica and
system to provide symptom relief. Terpenes,
Cannabis Sativa. These two sub-species have
which are found in all plants, contribute not
been selectively bred together to form hundreds
only to the flavor and scent of Cannabis,
of different hybrids. Aside from their physical
but have important medicinal benefits. For
differences, these breeds each have unique
example, Limonene, also found in citrus fruits,
lives a little bit better and is one tool
profiles and different ailment specific properties.
elevates mood, relieves stress and decreases
in the toolbox of whole health.
For example, Cannabis Indica is a shorter, darker
gastrointestinal complications such as heartburn.
plant than Cannabis Sativa and is known to
All of these active ingredients interact with
possess higher levels of the active ingredient CBD
one another to create cumulative effects
than the average Sativa strain. Though the genetic
that are greater than any single component
background is critical to understanding the plant,
individually. Each variety of Cannabis contains
Peace Naturals places a greater importance on
different ratios of active ingredients.
the active ingredients which lie within all breeds.
Cannabis is not a cure. Medicinal Cannabis is a key component to making
www.peacenaturals.com
answer your questions and can be reached toll-free at 1(888) 64-PEACE (73223).
2015 JUNE AWARENESS & EVENTS
OVER $300,000+
Raised Across Canada this Summer
RIDES Biking the Grand for Scleroderma
4th Annual Scleroderma Ride for
Date: June 14
Research
Location: Cambridge, Ontario
Raised: $1,900
Date: June 21
The Scleroderma Society of Ontario
Raised: $33, 300
Location: Vancouver, BC
Combined research project with the Scleroderma Clinic at St. Paul’s Hospital and BC Genome
Nataly Woolfrey & her husband, Adam Woolfrey
Scleroderma Voice Fall 2015 | 18
Nataly Woolfrey & her mother, Heidi Koester
2015 JUNE AWARENESS & EVENTS
OVER $300,000+
Raised Across Canada this Summer “Everesting” Kootenay Pass for Scleroderma Research: A Very Hard
WALKS
Ride for an Even Harder Disease Date: July 4
Location: Everesting, BC
Hamilton’s Walk or Run in the Park for
Raised: $6,000
Scleroderma
The Scleroderma Society of Canada
Date: June 6 Raised: $92,400 The Scleroderma Society of Ontario
Walk to Defeat Scleroderma Date: June
Location: Montreal, QC
Raised: $65,000 Canadian Society of Arthritis
Jaime Frederick & Brian Marsh
London’s Walk or Run in the Park for Scleroderma Date: June 6 Raised: $21,800 The Scleroderma Society of Ontario
Jaime Frederick & his mother, Joan Frederick
Scleroderma Voice Fall 2015 | 19
2015 JUNE AWARENESS & EVENTS
OVER $300,000+
Raised Across Canada this Summer Ottawa’s Walk or Run in the Park for
SOCIAL EVENTS
Scleroderma Date: June 13 Raised: $11,600
Scotiabank Community Day
The Scleroderma Society of Ontario
Date: June 5 Location: North Vancouver, BC Raised: $8,965 + $5,000 from Scotiabank = $13,965 Combined Research project with the Scleroderma Clinic at St. Paul’s Hospital Toronto’s Walk or Run in the Park for
and BC Genome
Scleroderma Date: June 27 Raised: $19,600 The Scleroderma Society of Ontario
Music & Dessert Night Date: June 7th Location: Thunder Bay, ON Raised: $885 The Scleroderma Society of Ontario SABC’s 31st Annual Conference Nova Scotia’s Walk or Run in the Park
Date: June 13
for Scleroderma Date: June 13 Raised: $8,000 The Scleroderma Society of Nova Scotia
13th Edition Benefit Golf Tournament Date: June 13 Location: St. Colomban, QC Manitoba’s Walk or Run in the Park for
Raised: $13,000
Scleroderma
Sclerodermie Quebec
Date: June 28 Raised: $40,200
Living with Scleroderma- Patient
The Scleroderma Association of Manitoba
Education Forum Date: June 24
Scleroderma Voice Fall 2015 | 20
Location: Hamilton, ON
2015 JUNE AWARENESS & EVENTS
OVER $300,000+
Raised Across Canada this Summer SUCCESSFUL CONFERENCE Scleroderma
Association of British Columbia puts on informative day
T
he Annual General Meet-
With the business part of the day over, we
up for the day was an interactive, ques-
ing and Conference of the
rolled right into the conference and the
tion and answer session whereby the
Scleroderma Association of
guest speakers. The organizing commit-
audience could ask the panel general
British Columbia (SABC) was
tee (Bob with some help) kept on the
or specific questions about how they
held on Saturday, June 13
ball to fill the time slots with interesting
deal with the disease.
at the Holiday Inn Express at
and relevant speakers. The Arthritis Soci-
Metrotown, Burnaby, B.C. with as many
ety provided Tips and Tools for Managing
This was yet another success with the
as 70 SABC members, friends, family,
Chronic Pain and Dr. Ada Man presented
70 people fitting into a space we had
newcomers and special guests.
new research directions in scleroderma
expected would accommodate only
before our local Dr. Jim Dunne updated
50. It was a great opportunity for the
Our President, Rosanne Queen, chaired
us on the progress of the Scleroderma
attendees to gather information, talk
the meeting and provided her summary
Genome Research Project.
amongst each other and be part of a
of the highlights of SABC’s accomplish-
strong and caring community. Thanks
ments and involvement in community
Before lunch, the Gurmej Kaur Dhanda
go to the organizers and facilitators
events (of which there were many). The
Memorial Scleroderma Community
throughout the day to make the day
financial position of the association
Service Award was presented to Donna
what it was. Special thanks go to the
remains strong with general donations for
Gervais for her many years of involve-
corporate supporters; Bayer, that made
operations and research as well as corpo-
ment in SABC and the community and
video recording of Maureen’s talk and
rate support on various fronts. The elected
the Gurmej Kaur Dhanda Scholarship
the panel discussion possible (these
board consists of Rosanne Queen, Joan
was presented to Dr. Kun Huang. The af-
will be available on the website) and
Kelly, Bob Buzza, David Queen, Grant
ternoon program began with Dr. Huang’s
Actelion, which made it possible for
Dustin, Robyn Fox, Neil Mackie, Dianne
presentation The Contemporary Disease
representatives from out of the lower
McPhee, Sue Ashworth, Nadine Morton,
Burden of Systemic Sclerosis followed by,
mainland to attend the conference.
Melissa Patton, Michael Queen and
SSC and SSO President Maureen Sauvé’s
Melanie Ross, to serve the members and
perspective on national and worldwide
Watch for next year’s date and plan to
increase SABC’s profile in the community.
scleroderma-related progress. The wrap-
attend.
Scleroderma Voice Fall 2015 | 21
2015 JUNE AWARENESS & EVENTS
OVER $300,000+
Raised Across Canada this Summer WALKS IN CANADA
tle, tote bag, and t-shirt. barbecue and
those directly affected by scleroderma,
refreshments were offered at each walk
their loved ones, friends, families, dogs
location, yet each walk had something
and volunteers.
unique from the other. Hamilton’s walk featured the Hamilton Tiger Cat’s mascot
As part of Scleroderma Awareness
as Master of Ceremonies and Ed Hand
Month, we held four Ontario walks that
from W1310 in Ottawa. It was truly amaz-
took place on June 6 in Hamilton and
ing to see the dedication at Toronto and
London, June 13 in Ottawa, and June
Nova Scotia’s walks even with the stormy
27 in Toronto. There was also a Nova
weather. On the other hand, London
Scotia walk that took place on June
and Winnipeg’s walks were fortunate to
13 and closing in Manitoba on June
have fantastic turnouts along with beau-
he Walk or Run in the Park
28. Ontario’s walk raised over $145,000,
tiful weather. Children enjoyed playing
for Scleroderma is one of
Nova Scotia $8,000 and Manitoba just
with Dom Sports Giant Games in Toronto
the Scleroderma Society of
over $40,000. The money raised will go
and face painting in Ottawa.
Canada’s largest fundraisers
directly to our ongoing research, support
and was a huge success this
and education for patients and families
On behalf of the Scleroderma Society
year! Not only do the walks
living with Scleroderma.
of Canada, we would like to thank all of
Significant funds raised in four provinces
T
attended the walks this year, including
provide physical benefits, but teach
the sponsors, supporters, participants,
compassion and spread awareness
Every individual that registered for the
volunteers and donors who made this
about this debilitating disease. Over 500
walk received a scleroderma water bot-
all happen. i
Your gift will provide support to those living with scleroderma and will help in the research. Enclosed is my gift of:
$300
$250
$150
$100
Other
Name: Address: City:
Postal Code:
Telephone:
Research is our only hope for a cure ❑ I wish to receive an official receipt for tax purposes ❑ I wish to receive the Scleroderma Voice Magazine ❑ by mail ❑ by e-mail This gift is given: ❑ In honor of ❑ In memory of
Email Address: Please make cheque payable to: Scleroderma Society of Canada 41 King William Street, Suite 203, Hamilton, ON L8R 1A2 I wish to pay by: ❑ cheque (Scleroderma Society of Canada) ❑ credit card Please charge my: ❑ VISA ❑ MasterCard Expiration: Card No.: Signature: DONATIONS ONLINE www.scleroderma.ca DONATIONS BY PHONE 1-866-279-0632
Scleroderma-DOnation_Slip.indd 1
Scleroderma Voice Fall 2015 | 22
Name: Please send acknowledgement to: Name: Address: City:
Postal Code:
The Scleroderma Society of Canada (SSC) is a registered charitable organization, No. BN86958 8772 RR0001. SSC may retain your contact information & represent you, but it will not share your contact information with any person or organizations without your prior consent. Upon your request, your name will be removed from the SSC’s contact list.
2015-09-02 8:42 AM
NUTRITION
Decreasing PAINFUL INFLAMMATION
ELIMINATING POTENTIAL FOOD ALLERGENS FROM YOUR DIET BY NANCY MORENCY, HOLISTIC NUTRITIONIST
An important step in decreasing the inflammatory response in the body is to eliminate potential food allergens from the diet. The most common foods that trigger this type of response include: wheat, dairy, soy, corn, peanuts and seafood.
O
ften, people with a chronic condition or auto-immune disease, such as Scleroderma, also suffer from something called
Leaky Gut. This is when the small intestinal lining has been compromised to allow food particles to pass through to the blood stream before they have completed the digestion process. These large food molecules must now be dealt with by the immune system to prevent them from premature absorption. The immune system has to kill the undigested food just as it would attack any foreign invader in the body. Once the immune system has
Scleroderma Voice Fall 2015 | 23
NUTRITION
attacked a particular food once, it will
amounts of each food should be eaten
blackberries, raspberries, cherries)
recognize it the next time it encounters
and the foods should only be ingested
2 cups raw baby spinach
the same molecular structure, and attack
once within the 48 hour period. This pro-
4 cups rice, almond or coconut milk
it again, even more quickly than the first
cess is repeated until all of the foods that
4 teaspoons of ground flax seeds
time. This process causes inflammation
were eliminated have been reintroduced.
and it can lead to intolerance and even
It is important to keep all foods that
Put all the ingredients in a high powered blender,
allergies to certain foods.
caused any sort of a reaction out of the
blend on high until fully mixed and enjoy!
diet while you are healing.
Note: This recipe serves 4 smoothies.
When beginning an anti-inflammatory
It can seem like a daunting process,
diet it is important to determine what
but the results are well worth the effort.
your food allergies are, so that you can
Without the culprit foods in your diet,
remove them from your diet and take
you will soon be feeling much better. It
the steps required to heal your intestinal
is a good idea to work with a Nutritionist
lining. Aloe Vera Juice and the amino
or Naturopathic Doctor to ensure you
acid L-Glutamine have proven to be
are properly replacing the nutrients you
very healing to the digestive tract (when
have removed from your diet with foods
taken on an empty stomach) and can
that are easier for you to tolerate.
Grain Free Breakfast Muffin
help to heal Leaky Gut. I have included two allergen free, The next step is an elimination diet. This
nutrient dense breakfast recipes.
is the process of removing all of the potential food allergens for a 2 week period. It can be very challenging, given
Mixed Fruit Smoothie
that wheat, dairy, corn and soy are present in most foods in the North American diet. After the 2 week period, one food is reintroduced every 48 hours. The two
2½ cups ground almonds
day time period allows you to observe
¼ cup melted butter
several types of potential reactions to
3 eggs
the food. Reactions could include: a
½ cup honey
head ache, stomach bloating or pain,
½ teaspoon sea salt
cramps, nausea, diarrhea, constipa-
1 teaspoon baking powder
tion, insomnia or a skin rash. Basically, it could be anything that makes you feel
Preheat oven to 325 degrees convection bake or 350
uncomfortable or causes you pain.
degrees bake. Mix eggs with honey in a bowl with an electric mixer until smooth and fluffy. Add ground
It is a good idea to keep a journal at this
almonds, sea salt, baking powder and melted butter.
time to ensure you can easily identify
Mix until blended. Spoon evenly into a parchment cup
which food is linked to the symptom you
lined muffin tray. Makes 10–12 muffins. Bake for 20
are experiencing. The more specific you
minutes.
can be with your reintroductions, the more information you will obtain. For example, when reintroducing dairy, you may want to try a small amount of the healthiest
2 ripe banana’s
dairy products first. The order for the rein-
1 cup coconut yoghurt
troduction may look like this: kefir, yoghurt,
1 cup frozen blueberries
butter, cheese, and lastly, milk. Only small
1 cup frozen mixed berries (blueberries,
Scleroderma Voice Fall 2015 | 24
Disclaimer: The information provided in this article is intended for general well-being and is not meant for the purposes of medical diagnosis, treatment or prescribing for any medical disease, or any licensed or controlled act which may constitute the practice of medicine. Nutritional advice is not intended to take the place of your doctors’ recommendations.
NUTRITION
Healthy Tips RECIPES FROM GOODNESS ME FOUNDER never misses an opportunity to share her passion with others. i
Goodness Me Recipes:
Chicken and Mango Salsa Salad A lovely contrast of flavours, textures and colours. 2 cooked medium boneless, skinless chicken
JANET JACKS
J
breasts, cut into bite-sized pieces (about 3
anet Jacks is the founder of
cups)
Goodness Me Natural Food
1 cup red pepper, finely chopped (one medium
Markets, author of Discover
red pepper)
the Power of Food, as well as a
1 cup mango, peeled and diced (½ of a large
health and wellness educator and motivator. Health is her
mango) 1 head broccoli chopped (peel stalk
1 cup red onion, finely chopped (½ medium)
passion, and she lives each and every
and cut florets into bite-size pieces)
1 avocado, diced
day sharing this with every person she
½ red pepper, cut into slivers
1 cup cilantro, finely chopped
meets. Having opened the business over
½ red onion, cut into thin slices and
30 years ago, Janet’s wealth of health
quartered
Dressing
knowledge has only increased dramati-
½ English cucumber, sliced thin
1/4 cup lime juice
cally, allowing her to serve her customers
1/2 cup extra-virgin olive oil
and family even better. Though she orig-
1. Combine salad ingredients in a bowl.
inally sought out health to heal her own
2. Pour dressing over just before
family, thousands of people have now
serving. This salad lasts several days in
benefitted from her passion.
the refrigerator.
pit, and score inside the skin lengthwise and
3/4 tsp. Herbamere 1. Cut the avocado in half lengthwise, remove the
Dressing
crosswise to make cubes about ½ inch (2 cm)
Janet teaches a number of different
3/8 cup flax oil
in size. Scoop out the flesh with a spoon. Cut the
workshops and classes on a range of
1 tsp. mild mustard
mango similarly, off centre to avoid the large pit,
health topics, from Diabetes to Homeopa-
1 Tbsp. dried minced onion
and score it into cubes right in the skin, scooping
thy to Adrenals and Stress. She also hosts
1 Tbsp. maple syrup
her own radio show, Just For The Health
1/4 cup apple cider vinegar
2. Mix salad ingredients together, stirring gently.
of It, every Saturday morning at 8 a.m. on
1 Tbsp. soy milk or milk (optional)
3. Combine dressing ingredients in a jar and shake
AM900CHML. Her radio show touches on
it out with a spoon.
well. Pour over the salad and toss lightly.
a variety of health topics and features
Gluten Free GF, Wheat Free WF, Dairy Free DF,
health experts and guests each week
Vegetarian V, Vegan VG, Low-Insulin Potential
Wheat Free WF, Gluten Free GF, Dairy Free DF
offering life-changing information. Janet
Diabetic Friendly DF
Low-Insulin Potential
Scleroderma Voice Summer 2015 | 25
Scleroderma Voice Fall 2015 | 25
PERSONAL
STORY
Concept TO Reality SCLERODERMA SEMINARS IN SEMARANG, INDONESIA BY NURJANAH BRUGGEMAN
F
inally, after more than three
Over the past 15 years I learned that
years, a thought became
my mind is something that I can control
reality. A patient seminar about
and because of that, I became a Ninja
scleroderma was held in my
Turtle with a fighting spirit (in a harmless
country of birth. What started
way of course). Fortunately, treatment
out of curiosity became a life
got this frightening disease under
changing experience.
control; and after a while, one question constantly popped up in my mind: How
WHO AM I
would my future have developed had I
My name is Nurjanah Bruggeman (37)
not been adopted?
and I am from the Netherlands. When from Indonesia by a Dutch couple, and
KOMUNITAS SCLERODERMA INDONESIA
then grew up in the northern part of
My question kept me googling, and I
the Netherlands. I was an active child
found out about Komunitas Scleroder-
and my passions were track and field
ma Indonesia (KSI), a Facebook support
and playing soccer. My world changed
group that was initiated by Sari Mort
drastically at the age of 22 when I was
in October 2011. Her sister, Iin Mintosih,
diagnosed with systemic sclerosis. From
is from Yogyakarta, Indonesia, and has
a Speedy Gonzales I turned into a turtle.
been diagnosed with systemic sclerosis.
I was nine months old, I was adopted
Scleroderma Voice Fall 2015 | 26
Patrisia, her daughter, Nurjanah
PERSONAL
STORY
KSI was created because of the lack of information for patients with scleroderma. It is a platform for Indonesian patients who are related to scleroderma. Thanks to Robyn Sims, the President of Scleroderma Australia, KSI was able to translate many booklets and brochures. The stories on this forum were heartbreaking and it was hard to see some beautiful women lose to their fight with scleroderma. Therefore, I reached out to the Dutch rheumatologist, Prof. Dr. Frank van der Hoogen, and he was very interested in starting an information ex-
Patient Seminar in Semarang
change with Indonesian doctors. To start with an idea is one thing, but to connect with those who share the same goal is
seminars. Unfortunately, due to much
GROWTH
a different story. We had to overcome
unforeseen circumstances, he could not
Seeds are planted and only time will tell
many hurdles in the last three years,
attend. Nevertheless, there is still collab-
how they grow. My first name, Nurjanah,
but out patience and persistence were
oration between Indonesian and Dutch
means “light from heaven”. I am part
rewarded, when finally, two very kind
rheumatologists.
of the growth cycle, and if we continue
people helped us further our journey.
our journey with all those good hearted Together with my husband, we traveled
people, we will probably be able to raise
SEMINARS IN SEMARANG
to Indonesia (a marathon journey), and
more awareness in Indonesia. As we
In February 2014, I made Patrisia Ayun-
I got the chance to represent KSI togeth-
have our KSI slogan: Scleroderma, hard
ingtyas, who also has scleroderma,
er with Patrisia at both seminars. I spoke
but not alone. Care for scleroderma and
an admin for KSI. We share the same
at the IRA meeting and informed the
your warmth will save us. i
passion in life, like standing up for those
Indonesian rheumatologists about KSI
in need. She told me about her doctor
and the next World Scleroderma Con-
Dr Rakhma Yanti Hellmi and I informed
gress. Art this meeting there was also a
Patrisia about Prof. Dr. Frank van den
lecture about “Importance Cardiopul-
Hoogen. Connecting people is some-
monary Evaluation in Systemic Sclerosis.
thing I like to do and that is why my
The patient seminar felt unreal, especial-
nickname is Nuri Bridge. My last name is
ly because I had the chance to meet Iin
Bruggeman and the first part of it (Brug)
Mintosih. Because of her, KSI started, and
means Bridge.
after all those years, I was now looking her in the eyes. I gave a speech at the
From June 5–7 2015, a registered Indo-
seminar in the Indonesian language
nesian Rheumatology Association (IRA)
(thanks to preparations by my sister-in-
symposium took place for doctors, and
law_ and it was an honor, just for being
on June 7, 2015, there was a symposium
with all these scleroderma warriors who
for patients with lupus and scleroder-
make the best of their lives. We hope the
ma. Both took place in Semarang. Dr.
Indonesian patients will not feeling lone-
Rakhma Yanti Hellmi invited Prof. Dr.
ly anymore in their battle, and will share
van den Hoogen to participate in both
their stories with each other.
Patrisia, Nurjanah, Dr. Hellmi
Scleroderma Voice Fall 2015 | 27
AWARENES
MONTH
AWARENESS MONTH June witnessed events across the country
The Scleroderma Society of Canada gained awareness throughout the nation, from radio shows to television stations, online journals and news paper ads. There were 76 media hits with more than 10.8 million media impressions earned, media outlets such as Vancouver Sun, AM640 Toronto, CKNW 980 Vancouver, AM770 Calgary, and 800 CJAD Montreal.
P
resident Maureen Sauvé
non-profits Scleroderma Research Foun-
post to take the pledge and telling
was interviewed by CHCH
dation and Scleroderma Foundation on
others about scleroderma on June 9,
News in Hamilton, Ontario
Hard Word Harder Disease campaign
and 51,900 people were reached on
and Global TV in Burnaby,
and the number of people engaged
International Scleroderma Day June
B.C. In her interview with
spiked throughout the month of June.
29. We had 13 bloggers collaborating
Global TV she was able to
Who was talking about scleroderma?
with the campaign including three
discuss what is happening in recent
Canadians in Ontario, British Columbia,
Canadians, who have some connec-
research. “Today there is no real anti-fi-
Saskatchewan, Manitoba, Nova Scotia,
tion with scleroderma and their blogs
brotic drug, it will be the next big break-
Alberta and New Brunswick talking
were unique regarding the lifestyle,
through and there is research currently
about scleroderma but connecting
treatments or stories of someone they
ongoing with positive results in the early
internationally with other scleroderma
knew. The first blogger, Donna Chaffins,
stages,” Maureen said.
associations across the globe.
talked about her story: “I first heard the
Awareness is what will get us closer to
Facebook and Twitter engagement
of my best friends was diagnosed with
finding a cure. Rresearch is vital but
surpassed 163,000 people on the day
it. Because of that, I’ve been familiar
resources are thin. This year for the sec-
the campaign was launched, June 1
with the disease for awhile. Yet over the
ond time we partnered with American
with 116,400 people responding to the
last 30 years, with the exception of my
word scleroderma in 1985-86 when one
Scleroderma Voice Fall 2015 | 28
AWARENESS
MONTH friend, I rarely hear the word,” (http:// blogbydonna.com/june-is-scleroderma-awareness-month/). This blog was shared 176 times with 21 responses including several saying they never heard of the disease before. Our Canadian blogger Alicia shared her story about her mother-in-law and commented, “It’s incredible how the research has advanced since Tina was diagnosed, however, because so few people are aware of the disease, researchers don’t
MAKE A DIFFERENCE
always get the resources they need,” (http://www.keepitbeautifuldesigns. com/2015/06/have-you-heard-ofscleroderma.html). i
June is SCLERODERMA Awareness Month all across Canada.
Origins of SCLERODERMA DAY
Why we honour artist Paul Klee on June 29
I
f you are reading this article, you
Local communities will be hosting a variety of special events to raise awareness and fund-raise for SCLERODERMA. VISIT: www.sclerodermaontario.ca/Upcoming_Events.html
! Your gift will provide support to those living with scleroderma and will help in the research for a cure. Enclosed is my gift of:
3
th
anniversary
3 3 3 3 3 3 3 3 $300 $250 $150 th
anniversary
th
th
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q I wish to receive an official receipt for tax purposes q I wish to receive the Scleroderma Connection newsletter q by mail q by e-mail
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Telephone: Email Address: Please make cheque to the order of: Scleroderma Society of Ontario 41 King William Street, Suite 206 Hamilton, ON L8R 1A2 I wish to pay by: q cheque (Scleroderma Society of Ontario) q credit card Please charge my: q VISA q MasterCard Expiration: YEAR: Card No.:
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The Scleroderma Society of Ontario (SSO) is a registered charitable organization, No. BN86958 8772 RR0001. SSO may retain your contact information & represent you, but it will not share your contact information with any person or organizations without your prior consent. Upon your request, your name will be removed from the SSO’s contact list.
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Scleroderma-Awareness-Ad_Final.indd 1
2015-05-21 11:58 AM
probably know that June 29th is Scleroderma Day, a day when the members of the global scleroderma community work especially hard to
who made art that defied traditional
Guggenheim Museum and the Metro-
raise awareness of a rare disease that
styles. He painted striking scenes that
politan Museum of Art.
is all too common. The day has become
were childlike but insightful and that
a tradition in our annual calendar, the
often featured images like moon faces,
Paul Klee lived with scleroderma. He
keystone of Scleroderma Awareness
arrows, stick figures and suspended fish.
painted through tightening skin, Rey-
Month and the day around which we
He was Paul Klee, a Swiss-born German
naud’s, dyspnea and dysphagia. In the
schedule our annual walk and run events.
painter whose best-known works in-
last full year of his life, he created 1,253
clude Death and Fire, Hammamet with
works of art despite his declining health.
The story behind the day, however,
its Mosque and The Twittering Machine.
Klee died peacefully in his sleep on June
reminds us of why our work is so
He influenced the New York School
29, 1940. Today, World Scleroderma Day is
important. The story involves a man
and is a star in the collections of the
part of his legacy. i
Scleroderma Voice Fall 2015 | 29
AWARENESS
MONTH
Jazz Exposure
Video prompts Awareness
Scleroderma video at Vancouver International Jazz Festival
Initiative was to interview ordinary people at random
O
BY ROSANNE QUEEN, PRESIDENT SABC.
n June 9 we conducted an experiment – our team went to the streets to find out how many people actually
knew or heard about scleroderma. As expected not many knew about this devastating disease or how to pronounce this word. Thanks to this initiative, we interviewed more than 50 people who most likely went to tell their
A
family, friends and co-workers about scleroderma. Furthermore, it was posted t the beginning of
tional Jazz Festival main stage. This was
on social networks such as Facebook
June, the Scleroderma
an opening to promote the disease to
and Youtube, reaching about 18,000
Association of British
the masses at the festival during June
people. Do you know of any other initia-
Columbia (SABC) was
18–21 and 27–28. Scrambling to seize
tives to raise awareness? Get in touch
approached with an
the chance, the Scleroderma Society of
with us and we will support you. Make
advertising opportunity
Canada developed a 15-second video
an event, become a support group
to include a video in the advertising
to put the message out there, “Scleroder-
leader, or make a donation, new ideas
mix on the large screen at the Interna-
ma Scrabble”. i
are always welcomed.
Personal Goal
Raising money for scleroderma research
O
n Sunday, September 20 at 8:30 a.m, Kira Riehm planned to run the OASIS Montreal half marathon to
raise funds for sclerodema research. Kira currently works as a research assistant with Dr. Brett Thombs at the Lady Davis Insitute for Medical Research in Montreal. Dr. Thombs is the principal investigator of the Scleroderma Patient-Centered Intervention Network (SPIN), which aims to develop and disseminate accessible interventions to improve quality of life for patients with scleroderma. Her personal goal is to raise $3,000. Good luck Kira and thank you for your support.
Scleroderma Voice Fall 2015 | 30
To view video please visit: www.scleroderma.ca/About-Us/Video.php
UNDERSTANDING
CANNABIS
An Adjunct Therapy
SCLERODERMA
& WORK RESEARCH STUDY Do You Have Scleroderma? Are You Currently or Recently Employed? We Would Like to Talk to You About Your Experiences Living and Working With Scleroderma? The Toronto Scleroderma Program and the Health Care and Outcomes Research Divison at the University Health Network are conducting a study on the employment experiences of women and men with scleroderma. We’re interested in understanding how working affects the lives of people with scleroderma so that we can help health care professionals and others design better treatments and interventions help people with scleroderma remain employed.
WE ARE LOOKING FOR PEOPLE WHO: • Are between 18 and 70 years old • Have been diagnosed with Systemic Sclerosis, also known as Scleroderma • Are currently employed, for 12 or more hours per week or • Have been recently employed (since 2010) Participants may be eligible if they do not have any other chronic disabling health condition. The study will involve a telephone interview that takes approximately 25–30 minutes to complete. A date and time for the telephone interview can be arranged that best meets your needs. The interview includes questions about your health, work and life experiences. Participation is voluntary and all the information you provie is completely confidential.
IF YOU ARE INTERESTED, PLEASE CALL 416.603.5850
Your Contribution can Make a Difference Scleroderma Voice Fall 2015 | 31
16th Annual Scleroderma Conference Hamilton, ON, September 18–19
THANK YOU
to our
SPONSORS PREMIER EDUCATIONAL PARTNER
GOLD SPONSORS
IN-KIND DONATIONS
LEAD SPONSOR
HOST SPONSOR
FRIENDS OF SCLERODERMA
MARKETPLACE EXHIBITORS
1-866-279-0632 | WWW.SCLERODEMACONFERENCE.CA