Research - Scleroderma Society Of Canada

Winter - December 2010
Sclerodermareport
Scleroderma Society of Ontario Newsletter
President’s Message
A Generous Contribution of $25,000 from
The Carpenter’s Union Charity Golf Tournament
Maureen Worron-Sauvé - President
In this Issue
• Geting Under the Skin:
A look at Body Image in Scleroderma
• Canadian Scleroderma Research Group:
Names from left to right are in regards to above picture are,
Gemma Beis, Sonia Mlacic, Claudio Mazzotta and Maureen Sauvé.
May 31, 2010 – The Carpenter’s Union Annual Charity Golf Tournament took
place this year at Angus Glen Golf Course. The Carpenter’s Union made a generous
contribution of $25,000.00 to the Scleroderma Society of Ontario from the proceeds
of the tournament. Many thanks to Claudio Mazzotto and everyone at the Carpenter’s
Union for their support. Golf Committee: Claudio Mazzotta, Carlos Pimentel,
Gemma Beis, Julie Palombo, Cristina Selva, Brenda Montesano, Sonia Mlacic.
Scientific Research Projects
• The 11th Annual Conference & AGM
Halifax, NS - Nov. 26 & 27, 2010
• Fanny’s Gift
• Hamilton Slceroderma Group
• Is a Support Group for You?
• Past Events – Special Thanks 2010
Scleroderma Society of Ontario Mission Statement
The Scleroderma Society of Ontario is committed to promoting public awareness, advancing patient wellness and supporting
research in Scleroderma. The Scleroderma Society of Ontario is committed to protecting your privacy and maintaining confidentiality of your personal information. We do not sell our membership list to anyone, save and except for the Arthritis Society of
Ontario. We do not trade this information with others that may use it to contact you about their own products or services.
Events
Getting Under
the Skin:
A Look at Body Image in Scleroderma
Submitted by Lisa Jewett
Y
ou walk into a room and feel eyes shifting to where you stand. You look
around and see people turn, smile awkwardly, or shift away. Thoughts race
through your head. “Are they looking at the tightened skin on my face? Or
is it my swollen and bent hands? Do they notice my disfigurements?” How do you
respond? Sit down and face them, walk away, or try and avoid their stares?
Living with scleroderma means not only learning how to cope with the medical symptoms of the disease but also how to deal with other people’s reactions.
Unwanted attention, questioning stares, and misunderstanding all go hand in
hand with the appearance related changes that are common in scleroderma. The
bodily changes associated with scleroderma are diverse and unique, which makes
dealing with them all the more challenging.
Feelings about body image are an important part of self-esteem for most people,
whether living with a chronic illness or not. Given this, it is not surprising that
dissatisfaction with body image can detract from overall quality of life. So what
do we know about body image among people living with scleroderma? Unfortunately, the answer is, not very much. Most research on body image comes from
studies of people with eating disorders and weight issues, which are typically not
the focus for someone with significant visible disfigurements, as in scleroderma.
My goal as a Master’s student and trainee with the Canadian Scleroderma Research Group (CSRG) is to address this current gap in a much-needed area of
research. Specifically, my projects aim at uncovering what aspects of body image
are relevant for people with scleroderma and how best to measure them. Body
image is a complex concept, with many definitions and dimensions, so clearly
identifying and targeting specific aspects of interest are highly important, as
well as establishing proper measurement of each. Furthermore, when developing questionnaires, it is essential to make them feasible to administer, by keeping
them simple and as short as possible so that you, the respondents, can realistically fill them out!
When I first started reviewing the literature on different aspects of body image,
I came across the topic of body image avoidance. It involves the avoidance of
objects and/or situations because they cause distress or concern about the body.
This can entail avoiding social situations where attention is given to appearance
or hiding certain body parts that might provoke anxiety during everyday interactions. Ironically, the fear of being negatively evaluated or judged by others
based on appearance can sometimes lead to what others perceive as defensive or
avoidant behaviours and may actually bring out negative responses from others. This might be described as a vicious cycle where uncomfortable attention is
given to disfigurements from scleroderma, and attempts to avoid this attention
can make a person with disfigurements appear standoffish or otherwise uneasy,
which impacts relationships negatively.
So far, avoidance or anxiety related to body image has only been measured in
women with concerns about weight, even though it is clearly important for
people dealing with physical changes from injuries or diseases like scleroderma.
Due to the fact that body image avoidance has only been studied in women with
weight issues, the questionnaire used to measure it, is specific to those concerns.
Our task was to adapt this original tool in order to make it applicable to the
experiences of people with scleroderma. A team of experts who work in the
field helped to create new items that resulted in a scleroderma-specific body image avoidance questionnaire. Some examples of items from this questionnaire
include asking respondents how frequently they wear clothes that hide changes
to the skin, or how often they hide their hands so that people cannot see them.
In addition to body image avoidance, other relevant body image issues for people
with scleroderma include feelings of discomfort in social
settings due to appearance, as well as dissatisfaction with
particular body parts. These two topics have been examined in individuals with disfiguring burn injuries, through
a questionnaire developed specifically for that group of
people. That questionnaire, however, has items that are
less central for scleroderma (e.g., how satisfied are you
with the appearance of your legs), in addition to being
repetitive and quite lengthy; therefore making it less realistic to administer to people who are also answering many
other questionnaires, such as those who participate in the
CSRG Registry. Given this, we undertook another project
that involved adapting the original questionnaire measuring
social discomfort and body image dissatisfaction in burn victims, to make it more applicable to the scleroderma situation
and more easily completed by respondents. This entailed only
keeping items that were specifically related to scleroderma, such
as those asking about dissatisfaction with the hands and face, in
addition to reducing the number of repetitive items about social
discomfort. We developed a shorter, six-item questionnaire, found
that it was as accurate as longer versions, and we are currently integrating it into the CSRG questionnaire package.
These projects related to uncovering and measuring important body image dimensions in scleroderma are just the beginning. They constitute a
necessary first step to take before we can move toward our ultimate goal,
which is to adapt or create educational material that targets coping with
important body image issues for people with the disease. To date, no interventions have been specifically developed for scleroderma, but there are sources
of information that exist for other groups that can be useful for scleroderma.
One organization, Changing Faces (www.changingfaces.org.uk), is a non-profit
group from the United Kingdom whose main goal is to provide support for individuals touched by disfigurement and to increase public awareness about issues
surrounding disfigurement. Changing Faces focuses largely on issues related to
body image avoidance and social discomfort due to appearance. For instance, the
organization provides workshops that teach strategies on enhancing overall
self-esteem and on learning how to manage the reactions of others in different social settings. Additionally, Changing Faces has produced and made
available resources, including DVDs, booklets, and guides, designed for both
healthcare professionals and individuals living with disfigurements. We are
planning to build on this work from Changing Faces to develop interventions for scleroderma based on their principles and from information that
we plan to gather by essentially asking people with the disease to tell us
about their lived experiences with respect to their body image.
Knowing your body to look a certain way for many years of your
life and then suddenly seeing disfiguring physical changes can be
devastating. Body image is an important part of identity and
learning how to accept and deal with significant changes to
your appearance is no small task. Acknowledgement and attention to this matter is the first step, but there is still much
more to be done. SSO
Research
Canadian Scleroderma
Research Group
Scientific Research Projects
The Scleroderma Society of Canada
presents its
S
cleroderma is a disease characterized by fibrosis or “scarring” of the skin and internal organs. This fibrosis is caused
by the laying down of excess collagen in the tissues. This
collagen is produced by cells called fibroblasts. What stimulates
fibroblasts to be overly active in scleroderma is not known.
Three different research projects at the CSRG are working on
discovering the keys to this fibrosis. Our commitment to these
projects is $100,000 per year for three years.
Dr. Marc Servant, Ph.D
Dr. Servant’s lab has been looking to see if the same
antibody that stimulates fibroblasts may also be stimulating
blood vessel cells.
The 11th Annual
Conference & AGM
in Halifax, Nova Scotia, Nov. 26 & 27, 2010
“Living Well With Scleroderma”
His early work has indeed shown that there is an antibody
in blood that does stimulate blood vessel cells. This is a very
exciting development and our plan is to pursue that finding
with many more extensive studies.
P
resentations will concentrate on learning new ways
and new skills to manage and cope with some of the
daily problems we face with scleroderma. We hope
these new skills will contribute to a better quality of life and
a more fulfilling life style despite some limitations created
by the disease. We will utilize the holistic model of health,
concentrating on the mind, body, spiritual dimensions of
health and healing. We hope you will consider travelling
to eastern Canada this fall to learn how we “Live Well
with Scleroderma” here in Nova Scotia. We look forward
to your visit with us and hope you will enjoy our warm
maritime hospitality.
Dr. Mark Trifiro, MD
Has taken a very new approach to studying the blood vessels. For
the first time, using a new tool called laser capture microdissection,
he has been able to isolate and remove individual blood vessel cells
from scleroderma skin and study those cells isolated from the other
tissue around them.
The conference will be held at the
Westin Nova Scotian in Halifax
(www.westin.com) .
The registration fee is $30.00.
Using genetic techniques they are studying if there is something
abnormal about the proteins on the surface of those cells. This could prove
to be an important clue to why the vessels are so abnormal.
Dr Andrew Leask, Ph.D
We and others have shown that the pro-adhesive matricellular protein
connective tissue growth factor (CTGF/CCN2) is overexpressed in
fibrotic diseases including scleroderma. CTGF has long been proposed
as a target for anti-fibrotic drug intervention in Ssc. Mice lacking
CTGF are resistant to bleomycin-induced skin sclerosis and that these
mice lack microvascular pericytes suggesting that CTGF may be
selectively involved with fibrogenesis.
• Determine the effect of reduction in CTGF expression on
overexpression of genes by FASSc fibroblasts.
• Determine the effect of reduction in CTGF expression on
adhesion and contraction of ECM;
• Determine the effect of reduction in CTGF expression on
adhesive signalling in SSc lung fibroblasts. SSO
For more information please contact:
Mary Beth Clark
(902) 423-3942
maryelizabethclark@yahoo.ca,
or
Michelle Richard
(902) 835-1571
michelle_richard3333@hotmail.com
or scleroderma.ns@gmail.com.
More details and registration forms
are available on the SSC website,
www.scleroderma.ca
Research
Fanny’s Gift
By Elnora Magboo
I
f your doctor tells you that you
have a rare, incurable disease,
what’s the first thing that will
come to your mind? Will this change
the way you live your life?
In 1978, Fanny Yarza was working
as a Registered Nurse at The Mississauga Hospital (now, Trillium Health
Centre) when one of her visits to a
dermatologist turned her world upside down. Tests brought about by a
noticeable discolouration behind her
ear revealed that she has scleroderma,
a rare autoimmune disease that causes
the skin and other organs of the body
to become hard and thick.
Also called progressive systemic scleThanks also to Mona McLeod and her volunteers who generously took in the
rosis, damage can affect the lungs, pledgesheets and handed out goody bags to all the walkers. Norma Augustine and
kidneys, the digestive tracts, lining of Kathy Donn were in the back busy tallying the funds pledged by the walkers.
joints, tendons and muscles. With no
known cure, Fanny’s first thoughts
phizes Fanny who estimates at least 50 countries she
were, “how serious?” and “how long would I live?”
has visited so far, experiencing different cultures and
exotic cuisines and a “variety of toilet paper” she joked.
A single woman with a zest for life and love for adventure, the
doctor’s pronouncement initially overwhelmed Fanny---but not For 32 years, Fanny has been living with scleroderma
for long. Her research revealed that although incurable, people and the neurological and physical challenges that inwith scleroderma can go on to live for years, depending on the clude mental slowness, impaired vision, clumsiness, shortstage or gravity of the disease at the time of discovery.
ness of breath on exertion, crippled fingers and associated
pain 24/7.
Fanny wasted no time to mope, mourn or let the debilitating
disease take control of her life. “In my preoccupation with the “Despite suffering with this disfiguring, disabling and incurday-to-day rat race of a life, it must have been God’s way of
able disease, I am thankful to God for this gift of life that I
telling me to let go and focus on the things that really matter,” continue to enjoy. Everyday I wake up is a gift, a blessing. I try
Fanny reflects.
to give back to others and with my example, to inspire them to
live life for the moment and live it to the full, no matter their
“I figure that the remaining part of my time on earth should be circumstances….
invested not in material things like a big house but something
more intangible yet fulfilling. I still have the gift of life that I Most important of all, find the time to be still. Once in a while,
can use to extend a helping hand. I also still have the gift of time God wants us to be still so He can untangle the knot we are in.”
to follow my heart and pursue what I am most passionate about
which is traveling,” Fanny declares.
I met Fanny when we became seatmates on the plane that was
flying us back from a holiday cruise in the western MediterShe started doing volunteer work and devoting her time to ranean in June this year. We hit it off instantaneously. As
worthwhile causes. On the side, she has also taken time to travel. the plane touched down, I knew that her story of courBoth activities have enabled her to cross paths with special people age needed to be told. SSO
who became lifelong friends. All these times, her siblings have
also rallied behind her, providing her varying levels of support.
“The best things in life are the people we love, the places we’ve
been and the memories we have made along the way,” philoso-
Thank you, Fanny,
for your gift of inspiration.
Research
Hamilton
Scleroderma Group
W
ith a multidisciplinary group of dedicated clinicians,
educators and researchers, the Hamilton Scleroderma Group are currently involved in education, clinical care and research in patients with systemic sclerosis. With
the catalyst of increased resources they now have the potential
to be more productive in advancing care through communication, education and clinically relevant research. Increased
manpower will allow for increased educational activities with
other medical and paramedical professionals. Furthermore,
extra resources will allow for the more timely generation of
preliminary data with which we can be competitive in nationDr. Maggie Larche took time to speak to Scleroderma patients after her
al and international grant awarding bodies. Our mission is
presentation at the Annual General Meeting in Mississauga. Dr. Larche gave an
the advancement of care, through education and research, for
overview of the newly formed Hamilton Scleroderma Group.
patients with systemic sclerosis.
Access to information
With the assistance of an educator/nurse/ research assistant
this initiative will provide a “first port of call” for patients or
their relatives and for those calling in to the SSO for advice or
information regarding SSc. This person will field telephone calls
and provide advice or guidance relating to SSc, and will have
backup from clinicians involved in the care of patients with SSc.
There will also be a coordinator/educator/advocate who would
play a pivotal role in coordinating patient care, entry into research
studies, education of patients/physicians/allied health professionals, as well as coordinating sample procurement for research studies,
administering Research Ethics Board applications and approvals.
Education
Unparalleled opportunity to establish outreach educational program in LHIN and primary care for improved diagnosis and clinical
care of patients with systemic sclerosis.
Opportunity to strengthen undergraduate and postgraduate education. raising the profile of this disease in the scientific and medical
community.
Opportunity to get local systemic sclerosis patients into clinical research studies.
Research
Drs. Mark and Maggie Larché , together with Dr. Haaland have initiated a project to determine whether certain “self ” proteins induce
an immune response in patients with SSc. This study is based on
published and ongoing investigations of transplantation rejection
in collaboration with Dr Simon Ball at the University of Birmingham, UK.
Dr. Larche accepted this cheque from the Scleroderma Society of Ontario
on behalf of the Hamilton Scleroderma Group.
Drs Kolb and Cox have a project determining the role of circulating fibroblast progenitor cells, called fibrocytes, in pulmonary
fibrosis, and are gathering a cohort of patients with scleroderma
lung disease.
In collaboration with the Hamilton Centre for Kidney Research,
Drs Kolb and Margetts are investigating the role of fibrocytes in
patients with kidney involvement using similar research strategies
to the pulmonary fibrosis study.
Drs Margetts and Mark Larché are developing a mouse model
of scleroderma by modifying an existing model of “sclerodermatous graft-versus-host disease”. The novel models developed in
Hamilton will employ mice that are transgenic for human MHC
molecules in order to re-create many features of human systemic
sclerosis that occur as a result of the human incompatibility. This
molecule will allow the pre-clinical evaluation of peptide-based
vaccines for the treatment of scleroderma. SSO
Education
Is a
Support Group
for You?
R
ecently I had a call from a young mother newly diagnosed with a
rare disease called Scleroderma. She went into great detail of her
symptoms as if to deny the reality of the diagnoses. The story is
heart wrenching, as many of us know, but to hear the fresh new features of
her dilemma brings life into perspective. My own issues seem less significant. I am neither a medical professional nor a trained health care aid, but I
am a proponent for Scleroderma patients and their families.
Some people are afraid to look at the faces of Scleroderma, possibly visiting
their own uncertain future, however, a support group can alleviate many
fears. Many of our volunteer support group leaders are veterans in their
own right. The knowledge they have accumulated on Scleroderma and its
side effects are often extensive. Through the contact of many patients and
their experiences, they are able to offer suggestions that may enhance the
medical treatment already taking place. There are many options to explore
such as biofeedback training, pure essential oils, hot wax, ultrasound treatments, warm water exercise, acupuncture, Jacuzzi bath, reflexology, massage, moisturizing lotions, balanced diet, meditation or prayer. Please confer with you doctor before trying any new therapies. There is no known
cure, and many of these suggestions will not help everyone, but talking to
someone who understands bring peace of mind to the new Scleroderma
patient.
I want to thank all the support group leaders for the role they play in reassuring and sharing with the patients in their community. When I think
about support groups and the roles they play, I remember a saying by John
Ruskin -
“
Kind hearts are the garden
Kind thoughts are the roots
Kind words are the blossoms
Kind deeds are the fruits
Helpful Hints
”
While the SSO does not endorse any of the products
mentioned below, nor can we attest to their effectiveness, we are passing on this information as we think it
may be of interest to you..
FOR TELANGIECTASIA
(those annoying red spots, especially when on
the face):
Vichy Laboratories have a corrective foundation line,
called Dermablend™. It comes in various formulations,
from a heavy pancake-type makeup, or cover-up stick, to a
liquid foundation which comes in a tube. This facial makeup is marketed to people with disfiguring birth marks, scars,
or other anomalies that cannot be covered by normal cosmetic foundations.
FOR DRY MOUTH:
Wrigley’s Excel brand has a new chewing gum on the market in
Canada, called Excel Mist. It is advertised as having “a hydrating
sensation with microbursts™”.
Also for dry mouth is a product available in the US at this time, called
OraMoist™, Dry Mouth Patch. The ad states that “this is small patch
adheres to the roof of the mouth then slowly dissolves, moisturizing
for hours.” It can be purchased at Walgreens or Rite Aid in the USA.
Here is the website information: www.OraMoist.com.
FOR DRY NOSE:
Try Secaris lubrication nasal gel. This quick acting gel is long
lasting, moisturizes dry, crusty and stuffy noses. It is a non medicated, non
addictive, water base gel that is compatible with oxygen therapy. SSO
In Memoriam
The Scleroderma Society of Ontario gratefully acknowledges the
generous donations made from family and friends in loving memory of:
Doreen Linn
Jill Martin
Maria Zseder
Jackie O’Sullivan
Rosemary Wadham
Collette Hamilton
Marilyn Tull
Carmella Mattiacci
Christina Donn
Joyce Rice
Mary Jane Chisholm
Stefan Wira
Frank Murphy
Linda Hutchins
Rita Lane
Ron Wooddisse
Al Kleber
Public Awareness
Past Events – Special Thanks!
Castle Frank Elementary School,
Kanata, ON
The grade eight kids at the Castle Frank Elementary School
held “A Night at the Oscars” and raised $1,633.00 which they
donated to the Scleroderma Society of Ontario. SSO Executive
Assistant Norma Augustine went to Kanata to meet the kids
and receive their wonderful donation.
May 31, 2010 – The Carpenter’s Union
Annual Charity Golf Tournament
The Carpenter’s Union Annual Charity Golf Tournament
took place this year at Angus Glen Golf Course. The Carpenter’s Union made a generous contribution of $25,000.00 to
the Scleroderma Society of Ontario from the proceeds of the
tournament. Thanks to Claudio Mazzotto and everyone at the
Carpenter’s Union for their support.
J.J. Charity Golf Tournament and Fall Wine Charity Tour
For the past 6 years, Dr. Brian Jafine and his brother have helped run the J.J. Charity Golf Tournament with a group of health care
professionals. Each year one member of the committee gets to choose the charity that will benefit from the proceeds of the tournament.
This year Dr. Jafine chose the SSO. His wife passed from scleroderma in 1994 after living with it for 14 years. The golf tournament raised
$17,825.00. This group also held a Fall Wine Charity Tour and raised $2,000.00 which was just forwarded to the SSO. Many thanks to
Dr. Jafine, his family and friends for making these generous contributions.
Saturday September 5, 2010 – Lynn Brunelle ran her 4th half marathon
(that is 21.1 km!) at Disney in California
On September 5, 2010 in support of her mother Jeanette Brunelle.. Lynn and Jeanette raised $3,000.00 for Scleroderma Research. These
ladies pay all their own expenses and all money raised is forwarded to the SSO. Thanks for all of your hard work and training Lynn. We
will be watching you on January 8, 2011 and January 9, 2011, when you run the Goofy Challenge in Florida (see upcoming events below).
Saturday September 25, 2010 The Second Annual SSO Golf Tournament
The Second Annual SSO Golf Tournament was held at Knollwood
Golf Club in Ancaster. 144 golfers participated in this event which
raised over $25,000.00. Special thanks to Mike Rice and Jason
Worron who, with the assistance of a dedicated golf committee,
put together a first class golf tournament. Watch for the notices
for next year. You will not want to miss it.
Sunday September 26, 2010 - Scotiabank Toronto Waterfront Marathon
Our team of 14 runners and walkers, including Dr. Mark Larche of the Hamilton Scleroderma Research Group, raised over $9,000.00.
Thanks to all of those who came out and participated. It was a beautiful day to run around Toronto and raise a little awareness for
Scleroderma. Again, watch for this event next year – it is super fun. SSO
Winter - December 2010
Ontario Support Group Contacts
(519)267-2597
EXECUTIVE BOARD
Maureen Sauve President
Catherine Buntain-Jeske Vice-President
Barbara Williams Secretary
Vidas Vapsva Treasurer
Peter Woolcott (Retired) Past President
Coordinator
Ada Tutman
tutman112@yahoo.ca
Belle River
Kandy Kurkcuyan
(519) 679-4115
Brantford
Fran Wolff
(519) 752-6648
kwolff1@rogers.com
Cambridge
Ada Tutman
(519) 267-2597
tutman112@yahoo.ca
Haldimand
Irene Goodale
(905) 765-0818
imgood@hwcn.org
Halton
John Littler
(905) 849-8356
Hamilton
Marilyn Pout
(905) 648-1330
Kitchener
Penny Pogson
(519) 570-4930
London
Bea Kiekens
(519) 641-6275
kieksjb@rogers.com
London
Bill Birtch
(519) 281-8143
wbirtch@rogers.com
Midland/Orillia
Jeannette Brunelle
(705) 526-9869
nettebrunelle@sympatico.ca
Mississauga
Vidas Vapsva
(905) 822-7868
vapsva@rogers.com
Niagara/St.Catharines
Barry Toth
(905) 646-8064
btoth@mergetel.com
Maria Colavecchia-Pfuetzner (lead)
Brittany Stager (website)
Irene Goodale (newsletter - AGM)
Ada Tutman (newsletter-research, support groups)
Ottawa
Aline Laporte
(613) 745-7829
sclero@sympatico.ca
Fundraising & Corporate Relations
Pembroke
Ralph Bergsma
(613) 735-3313
rbergsma@sympatico.ca
Sarnia
Susan Dunn
(519) 541-1064
Scarborough
Naana Daniels
(905) 686-7265
Thunder Bay
Rose Marie McCracken
(807) 344-8345
Tillsonburg
Julie Desplenter
(519) 842-3451
wjdesplenter@kwic.com
Toronto
Maria Colavecchia
1-888-776-7776
maria.colavecchia@sclerodermaontario.ca
Toronto
Kaarina Rennie
1-888-776-7776
sclerogrrl@yahoo.ca
DIRECTORS
Public Awareness
Brittany Stager (lead)
Mary Johnson
Barbara Williams
hamiltonsupportgroup@gmail.com
Finance & Administration
Vidas Vapsva (lead)
Maureen Sauve
Barbara Williams (membership)
Education
Cathy Buntain-Jeske (lead)
Marlene Gibson
Barry Toth
naanash67@yahoo.com
Research
Maureen Sauve (lead); Darlene Mattiacci
Mary Johnson; Cynthia Busch
Government Relations
Darlene Mattiacci (lead) Cathy Buntain-Jeske
Administrative Support
Executive Assistant Norma Augustine
Scleroderma Society 0f Ontario
(905)544-0343
SSO Toll Free
1-888-SSO-7SSO
Arthritis Self-Management Program
(416)979-7228
The Scleroderma Society of Ontario Web Page
www.sclerodermaontario.ca
Scleroderma Society of Canada Web Page
www.scleroderma.ca
Scleroderma Foundation Web Page
www.scleroderma.org
Advisors
Medical Advisor London - Dr. Janet Pope
Medical Advisor Hamilton - Dr. Elzbieta Kaminska
Medical Advisor Toronto - Dr. Sindhu Johnson
DISCLAIMER
The Scleroderma Society of Ontario does not endorse any
treatment, drug or diet reported in this newsletter. We wish only
to keep you informed. Check any treatment with your doctor.
For your convenience
You can now easily check your membership renewal date by looking at your mailing label. We have
recently moved to a common renewal date of April 1st each year, making it easier for us to track and
for you to remember. We believe our records are accurate but if you feel there is any discrepancy please
feel free to call Barbara Williams at 905-681-6017.
SCLERODERMA SOCIETY OF ONTARIO
136 Kenilworth Ave. N. Hamilton, Ontario L8H 4R8
Phone (905) 544-0343,
Toll-free 1-888-SSO-7SS0 (1-888-776-7776)
Fax (905) 543-1909
www.sclerodermaontario.ca
Membership Application / Renewal Form
Annual Membership Fee: $25.00
Household Family Membership Fee: $35.00
Name:
Address:
Apt#:
City:
Postal Code:
Prov.
Phone:
Email:
Please make your cheque payable to the Scleroderma Society of Ontario
Send to: Scleroderma Society of Ontario
136 Kenilworth Ave. N, Hamilton, ON L8H 4R8
1. Join:
❐ One Year ❐ Two Years
❐ Two Years
2. Renew: ❐ One Year
3. Give a Membership to:
Donor’s Name:
Amount Enclosed $
Date:
I would be interested in helping with:
❐ Phoning committee in my area ❐ Newsletter committee
❐ Public relations committee
❐ Computer work
❐ Fundraising committee
❐ Slceroderma support group
in my region
❐ Other