Sclerodermareport - Scleroderma Society Of Ontario

Information/Support
Ontario Support Group Contacts
EXECUTIVE BOARD
Maureen Sauve - President
Catherine Buntain-Jeske - Vice-President
Barbara Williams - Secretary
Brian Hinchey - Treasurer
Peter Woolcott (Retired) Past President
Coordinator
Ada Tutman
Belle River
Kandy Kurkcuyan
(519) 979-6447
Brantford
Fran Wolff
(519) 752-6648
kwolff2@rogers.com
Cambridge
Ada Tutman
(519) 267-2597
tutman112@yahoo.ca
Haldimand
Irene Goodale
(905) 765-0818
imgood@295.ca
Halton
John Littler
(905) 849-8356
Hamilton
Marilyn Pout
(905) 648-1330
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@cogeco.ca
Ottawa
Aline Laporte
(613) 745-7829
sclero@sympatico.ca
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
(519)267-2597 tutman112@yahoo.ca
Brittany Stager (lead)
Mary Johnson
Erin Rooney
Barbara Williams
Lisa Scott
Finance & Administration
Brian Hinchey (lead)
Maureen Sauve
Barbara Williams (membership)
Education
Darlene Mattiacci (lead)
Irene Goodale (newsletter)
Ada Tutman (support groups)
Cathy Buntain-Jeske (AGM)
Fundraising & Corporate Relations
Cathy Buntain-Jeske (lead)
Scott Balinson (proposals)
Lisa Scott
naanash67@yahoo.com
Research
Maureen Sauve (lead); Darlene Mattiacci
Mary Johnson; Cynthia Busch
Government Relations
Maureen Sauve
Cathy Buntain-Jeske
Administrative Support
(905)544-0343
SSO Toll Free
1-888-SSO-7SSO
Arthritis Self-Management Program
(416)979-7228
The Scleroderma Society of Ontario Web Page
DIRECTORS
Public Awareness
marilynpout@gmail.com
Scleroderma Society 0f Ontario
Executive Assistant Norma Augustine
Advisors
Medical Advisor London - Dr. Janet Pope
Medical Advisor Hamilton - Dr. Elzbieta Kaminska
Medical Advisor Toronto - Dr. Sindhu Johnson
www.sclerodermaontario.ca
DISCLAIMER
Scleroderma Society of Canada Web Page www.scleroderma.ca
Scleroderma Foundation Web Page
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.
www.scleroderma.org
SCLERODERMA SOCIETY OF ONTARIO
NOTICE
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
Our Literature Order Form is now available on our Web site.
Please go to www.sclerodermaontario.ca or call the office at
1-888-776-7776 for detailed information.
www.sclerodermaontario.ca
Voting Member Application/Renewal Form
Annual Voting Member Fee: $25.00
Name:
Address:
Apt#:
City:
Prov.
Postal Code:
Summer 2011
Summer 2011
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
❐ One Year ❐ Two Years
2. Renew: ❐ One Year ❐ Two Years
1. Join:
Scleroderma Society of Ontario Newsletter
Public Awareness
A Gift To Help Unravel The Mystery Of Scleroderma
by Susan Docherty-Skippen
S
clerod erma
is a rare autoimmune
connective
tissue
disease that affects
small blood vessels
and causes excess
collagen accumulation. It results in a
thickening of the
skin or tissue on
internal organs. It
can also cause joint
swelling and pain.
At present, there is
no cure to the disease, though treatment options are
available.
(Left to Right): Maureen Sauvé, Sera Filice-Armenio, Catherine Buntain Jeske, Erin Rooney,
It is estimated that
Darlene Mattiacci, Scott Balinson, Dr. Maggie Larche, Dr. David Higgins, Dr. Elzbieta Kaminska,
some 40,000 CanaDr. Nader Khalidi, Dr. Mark Larche, Dr. Myrna Dolovich.
dians are living with
scleroderma.That’s why an innovative group of researchers, cli- have established the Hamilton Scleroderma Group (HSG).
nicians and care providers at St. Joseph’s Healthcare Hamilton
...Continued on page 2
Save the Dates: Saturday, September 24th, 2011
September
24 & 25, 2011
3. Give a Membership to:
Donor’s Name:
Amount Enclosed $
Sclerodermareport
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
... for more info see page 3
Scleroderma Education Conference: 8 a.m. – 4 p.m., Hamilton Convention Centre
Scleroderma Society of Ontario General Meeting: 4 p.m. – 5 p.m., Hamilton Convention Centre
Sunday, September 25th, 2011
Scleroderma Support Group Leadership Seminar: 10 a.m. – 3 p.m., Hamilton Convention Centre
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. We do not trade this information with
others that may use it to contact you about their own products or services.
Public Awareness
Summer 2011
...continued from page 1
The HSG is a multi-faceted team
Khalidi, and Carlisle. I credit
of healthcare professionals at
their outstanding care to savSt. Joseph’s Charlton Campus
ing my life. I’m both hopeful
that specializes in the research,
and optimistic that a cure
treatment and care of people livcan be found for sclerodering with scleroderma. All of the
ma for future generations
HSG doctors are attending physiand that this gift from
cians at St. Joseph’s Healthcare
the SSO will assist in
Hamilton and faculty members of
improving the lives
McMaster University’s School of
of people living with
Medicine.
scleroderma everyOn April 27, 2011, the HSG got a
where,” she says.
tremendous financial vote of conWell-known
fidence from the Scleroderma SoHamiltonian,
ciety of Ontario (SSO). That day
Maureen Sauvé,
Dr.
Gerard
Cox,
co-chair
of
the
Hamilton
Scleroderma
Group
the SSO announced a $456,000
is the president
donation to scleroderma research, and a professor of medicine at McMaster, “By combining clinical of the SSO. She
care with scientific research we’re enhancing our understanding
education and care at St. Joseph’s of the disease and ensuring our patients have access to clinicians says, “St. JoHealthcare Hamilton.
who are educated in the latest advances in Scleroderma care.” seph’s has alBarbara Williams has been living
ways been home
with scleroderma for the past six and a half years. She’s had to some incredible care providers and physithe good fortune of being treated by the care providers at St. cians. But it’s also a centre of research excelJoseph’s Hamilton Scleroderma Group. “I am truly thankful lence. That’s the kind of holistic, evidence-based
that I’ve had the opportunity to receive scleroderma treat- clinical care the Scleroderma Society of Ontario,
ment and care at St. Joseph’s, specifically by Doctors Cox, and its regional chapters are proud to support.”
Education
Summer 2011
Hamilton Scleroderma Update 2011
SATURDAY, SEPTEMBER 24, 2011
Objectives:
The event has been designed as a one day learning experience for both scleroderma patients and healthcare professionals. It will
feature current evidence and best practice information regarding early diagnosis, ongoing disease monitoring and recognition of
important medical warning signs, treatment options and management strategies to provide guidance for patients and healthcare
professionals. The goal is that better management of scleroderma as a multi-spectrum, chronic disease will be achieved.
Program Agenda:
08:00 - 08:50am
Conference Registration & Continental Breakfast
08:50 - 09:00am
Welcome & Opening Acknowledgments
Mrs. Maureen Sauvé
President, Scleroderma Societies of Ontario, Canada
KEYNOTE SPEAKER
Dr. Janet Poole
Dr. Janet Poole is a Professor in the Occupational Therapy Graduate Program at the
University of New Mexico in Albuquerque,
New Mexico. She is an occupational therapist, educator and researcher and has over
25 years of experience working with persons
with scleroderma and examining the impact
of the disease on various occupations including self-care, parenting, and employment. Dr.
Poole and a colleague from the College of
Nursing developed a self-management program for persons with scleroderma consisting of a workbook with learning activities
and a DVD with hand, mouth and upper and
lower extremity exercises. Dr. Poole presents
regularly at the Scleroderma Foundation
patient education conferences on hand exercises, mouth and face exercises, and occupational therapy. She was the keynote speaker
at the First Annual Patient Education Conference in South Carolina, served as a consultant on the Assisted Yoga for Scleroderma DVD, and most recently was recognized
as the “National Volunteer of the Year” by
the Scleroderma Foundation in the US.
09:00 – 10:00am
“Scleroderma Medical Update”
Elzbieta Kaminska, MD, FRCPC
Associate Clinical Professor, Division of Rheumatology,
McMaster University, St. Joseph’s Healthcare, Hamilton, ON
10:00 - 10:30am
Nutritional Break
10:30 - 11:30am
“Scleroderma Symptom Management”
Janet Pope, MD, FRCPC
Professor, Division of Rheumatology,
University of Western Ontario, Schulich School of Medicine,
St. Joseph’s Health Care, London, ON
11:30 - 12:30 pm
Scleroderma Society of Ontario – Please visit our Scleroderma Society of Ontario Facebook page and use
it to keep yourself and others informed about Scleroderma news, upcoming Scleroderma public awareness activities and Scleroderma fundraising events taking place throughout Ontario. You can also share with others
your story about living with scleroderma. You can also visit the Scleroderma Foundation Facebook page and
get connected to our Scleroderma friends in the United States.
*KEYNOTE SPEAKER “Scleroderma Occupational &
Physiotherapy Rehabilitation”
Janet Poole, PhD, OTR/L
Professor, Occupational Therapy Graduate Program,
School of Medicine, University of New Mexico,
Albuquerque, New Mexico, USA
12:30 - 01:30pm
LUNCH
For those with a Twitter Account, follow us @ Scleroderma_SSO.
01:30 - 02:30pm
“Complementary Nutrition for Scleroderma Patients”
Ms. Pamela Piotrowski, BASc, RD
Registered Dietician, The Family Health Team, Milton, ON
02:30 - 02:55pm
Nutritional Break
02:55 - 03:55pm
“Psychological Aspects of Scleroderma & the
London Multidisciplinary Treatment Program”
Warren Nielson, Ph.D, C.Psych.
Program Director,
Beryl & Richard Ivey Rheumatology Day Programs,
St. Joseph’s Health Care, London, ON
(If registered before Sept. 9, 2011)
Concluding Acknowledgments
Ms. Susan Docherty-Skippen,BSc, BEd(ADED), CRA, MEd(c)
Scleroderma Patient Educator Division of Rheumatology,
Department of Medicine, McMaster University, Hamilton, ON
Note: SSO members who require financial
assistance for conference registration may
contact the SSO office (1-888-776-7776) to
request an educational bursary for this event.
Social Networking and Scleroderma
If you are on Facebook, here are a few pages you may be interested in:
In Memoriam
The Scleroderma Society of Ontario gratefully acknowledges the
generous donations made from family and friends in loving memory of:
Vilma Avolio
Joyce Bielecki
Milka Cucuz
Sharron Bradfield
Melvin Brenn
David Gosnay
Daniel David Higson
Dora Torsnes-Hinds
Ethel Ilton
Elizabeth Karlovits
Lois Kraemer
Margaret Isabel Laing
Oscar Markovitz
Dale McLean
Barbara McLeod
Maria Orizaga
Robert Paquin
Miroslav “Mike” Pavlovic
Margaretha Peters
Connie Power
Ruth Puddicomb
Elmer Recoskie
Vito Settecase
Dinah Singer
Carroll Vapsva
03:55 - 04:00pm
CONFERENCE REGISTRATION
$25.00 per person
For more information, contact:
Sinead Irvine, Event Coordinator
Phone: 905-525-9140 ext. 22990,
Email: irvine@mcmaster.ca
Public Awareness
Summer 2011
Gala Raises Funds to Battle Disease
by Chris Clay Mississauga News
M
Summer 2011
Localized Scleroderma
by Dr. Ronald M. Laxer, Division of Rheumatology, and Dr. Elena Pope, Division of Dermatology, The Hospital for Sick Children
embers of the Mississauga Support Group of the
Scleroderma Society of Ontario raised $60,000
for research into the disease through a recent
fundraising gala.
S
cleroderma in children? Yes! Despite the fact that
scleroderma seems to peak in its 40’s, young children
may suffer from scleroderma as well. However, the
typical kind of scleroderma that occurs in adults (systemic
sclerosis) is much less common than localized scleroderma
in children, also known as morphea. In fact, morphea is ten
times more common than typical scleroderma in the pediatric population.
The fifth annual gala took place April 2nd at the Oasis Convention Centre. Almost 500 people came out to enjoy dinner
and dancing and to help raise funds by bidding on auction
items including a signed Toronto Raptors jersey, a weeklong cottage rental on Canal Lake, designer bags (including
Coach) and jewellery, among other items.
“Our master of ceremonies was (television personality) Rod Black and he ensured it was a lively evening!
Our guests were welcomed by pianist, Ian Green and enjoyed an evening of dining and dancing intermixed with a
performance by Canadian Idol Winner, Brian Melo, a
raffle and live/silent auctions. Eyebrows were raised
when the last auction item, an electric bike, was
driven into the hall. The evening was a great success,” said
Rosemary Vincec.
Patient Wellness
Rosemary Vincec, Mary Lou Botelho, Vidas Vapsva, Janice Borg and
Maria Szoke, organizers of the Mississauga SSO Support Group’s
Annual Fundraising Gala, pose for a photo.
Those living with scleroderma, which usually strikes women
between the ages of 30-50, experience poor circulation and
skin discolouration, a hardening of their internal organs,
reduced finger function and difficulty swallowing. It can
be fatal. The money raised through the gala will make a difference to those living with the disease. For more information, visit www.sclerodermaontario.ca
Thank you for supporting the 3rd annual Walk in the Park
Parc Lac Leamy, June 11th 2011
•A record 133
attendees
•A record of over
$11,000 raised!
Can’t wait to see you next year
Thanks for your support!
A recent consensus group has come together to propose a
classification for the different types of localized
scleroderma in children.
The different types include a) plaque or circumscribed morphea b)
linear scleroderma (that
can either involve an extremity of the face/head)
c) generalized morphea
d) pansclerotic morphea
and e) mixed.
and plaque morphea.
In addition to skin involvement, there may occasionally be other symptoms and signs as well. The most common is arthritis
affecting 15-20% of children. This can occur in the area of
skin involvement but can also be more generalized. The most
important complications occur in children who have localized
scleroderma involving the face or head. In a small percentage of
children, seizures may develop. Inflammation of the eye, uveitis,
occurs in about 5% of patients with localized scleroderma.
One of the biggest challenges in caring for
children with localized
scleroderma is to determine whether the lesions
are “active” or not. This
is very important in trying to assess how much
treatment to prescribe.
Early localized scleroderma, when it is active,
has a shiny center with a
Morphea typically begins
reddish, violaceous boras a hard white smooth,
der. The skin feels warm
waxy coloured area on
to touch. The size of
the skin. When it is circuthese lesions increases
lar it is called plaque or
over time and new lesions
circumscribed and typimay develop over time as
A child’s ankle with localized plaque morphea scleroderma
cally involves the trunk or
well. These indicate that
the back.
the localized scleroderma
When it extends in a linear distribution (more common on process is active and systemic treatment is needed. However,
the limb or face) it is called linear scleroderma. On the face sometimes extension may occur very slowly without the color
or head it can occur in two types. The first type occurs on change or warmth and it is only after several years of obthe forehead and may extend into the scalp. It looks like a servation that one realizes the process has been active. It is
sword cut and has been called en coup de sabre. The second extremely important to be able to develop simple measures
kind is different in that it typically involves the lower part to monitor disease activity.
of the face and the superficial layer of the skin is essentially
not involved. However deep to the skin there is marked loss Several treatment approaches have been recommended for
of the tissue leading to thinning and differences in growth patients with localized scleroderma. The most critical factor
of the two sides of the face. The linear kind on an extremity in deciding upon treatment is to determine the kind of localmay often extend across a joint and lead to difficulty with ized scleroderma that the patient has and whether or not it
moving the joint. It can extend deep into tissues and muscle is in the active phase.
leading to thinning of the extremity as well as poor growth.
The generalized variety involves many areas of the body. Pan- To learn more about Localized Scleroderma and how chilsclerotic can look like scleroderma in adults in that there is dren and adolescents affected by this disease can access
marked thickening of the skin generally but often sparing the specialized medical treatment, contact the Dermatology
hands and feet. Internal organs are not involved in this type Department, The Hospital for Sick Children, Toronto, Ontario.
of scleroderma. The mixed type includes features of linear www.sickkids.ca or www.aboutkidshealth.ca
Patient Wellness
Summer 2011
Living with Scleroderma – Jeannette’s Story
by Barb Williams
Fund Raising / Upcoming Events
Summer 2011
Past Events – Special Thanks!
UPDATE ON THE SCLERODERMA AWARENESS DANCE – Jeannette Brunelle held a dance in Penetanguishene on
M
November 5, 2010 to raise awareness for Scleroderma and the dance raised $2,135.00 without any corporate support. Again, the Scleroderma Society of Ontario cannot thank Jeannette and her family enough for all of their support and efforts.
Jeannette’s nursing career was cut short when she suffered the swelling, pain, fatigue and complications so common in scleroderma. As a
single parent, she was determined that her children would not view her
as someone sick and needing care. No matter how ill she felt she tried to
maintain a normal home life for them.
July 24, 2011 – IRONMAN FOR SCLERODERMA – LAKE PLACID - DAVE RECKZIN - Many thanks to Dave Reckzin
and all of his hard work and efforts in training for the Ironman to raise awareness and funds for Scleroderma Research. The great news
is that Dave and his family raised $3,100.00 as well as a ton of awareness about Scleroderma. The bad news is, Dave was knocked
off his bike during the Ironman and broke his collar bone and a rib and was unable to complete the race. However, he is even more
determined to start training again and complete an Ironman and keep alive the memory of his mother-in-law, Lorraine Polley who lost
her battle with Scleroderma in 2006. Please go to http://www.ironmanforscleroderma.com to learn more, check out Dave’s Facebook
Page (Ironman for Scleroderma) and/or make a donation through Canada Helps.org – click on “giving pages” and search “Ironman”.
eeting Jeannette Brunelle is like encountering a paradox. On
one hand, Jeannette has been living with the inconsistency of
Scleroderma since the early 1990’s. On the other hand, she is
a one-person whirlwind, involved in her community, her family, and her
own mission to spread the word about this disease
After trying physiotherapy, she joined her local YMCA to continue exercising. She met an instructor there who bought her a life belt and told
her to “to stay in the deep water and just keep moving”. She credits this
person’s empathy and understanding with motivating her to continue exercising to help with the pain and stiffness. Jeannette thought a Tai Chi
class might also help with balance and flexibility, plus the concentration
required would be a distraction to her pain. Before long the instructor
asked Jeannette to help lead the class and when the teacher left Jeannette took over and taught it for the next five years.
No longer able to work, Jeannette found mental stimulation by enrolling
in a long distance certificate program in Adult Aboriginal Education,
offered by the Georgian Bay Metis Council office. As a result of this
course she now teaches Beadwork at the local Seniors’ Centre and at
the Metis Centre.
But it’s her work on behalf of Scleroderma awareness that should earn
LONDON CAR SHOW – Stephanie and Paul Doyle hosted a Scleroderma Society of Ontario awareness booth on the weekend of
June 5, 2011 and raised a great deal of awareness as well as $150.00 in donations. Steve Plunkett who operates the show donated funds
to bring the amount up to $500.00. Many thanks to Stephanie and Paul for their efforts and to Steve for the top up. At the request of the
London Support Group, the funds raised will be redirected to Dr. Janet Pope and her clinic.
Jeannette shows pride in her daughter’s accomplishments. Lynn has
travelled to Disney World several times to shine a light on Scleroderma
since 2008. Lynn runs and Jeannette cheers her on. They pay all of their
own expenses and all funds raised through pledges and fund raising
events are donated to SSO for Scleroderma Research.
Raising funds for an unknown disease is hard work. To create awareness
Jeannette has spoken at the Midland Rotary Club about Scleroderma
and her daughter’s marathons She has manned a display booth at a
local health fair. Jeannette baked for days, and then held a huge bake
sale for scleroderma. She organized a Benefit Dance for Scleroderma
at the local Legion and most recently, Wal-Mart has agreed to match
any money raised by Jeannette at a June is Scleroderma Month display
booth at their store. These activities were only possible with lots of help
from family and friends.
Many years ago, Jeannette formed a support group in her area, starting
with 3 members and now numbering 10.They meet every few months for
lunch and to share their experiences with Scleroderma.
Jeannette is certainly an ambassador for scleroderma in the
Midland area. In fact, at the recent elections (where Jeannette was
volunteering of course), someone saw her and asked “how’s your
battle with scleroderma?”
Scleroderma is still a real and constant presence in Jeannette’s life. She
still has pain, although some days are better than others. She finds that
a high energy day is usually followed by one which makes her feel tired
and depleted. But she’s not saving up her good days; she’s using them
well, and spending them wisely. And the scleroderma community is all
the richer for her effort.
Jeannette spreads the message
“Today Scleroderma Has No Cure. Research is our hope!”
her applause and appreciation from everyone living with this disease. In
past issue this newsletter has featured Jeannette and her daughter Lynn
running the Disney Marathons. Lynn has completed five half-marathons
and one full-marathon at both Disney Parks (Florida and California)
Jeannette’s next goal is to try and do a 5K with her
daughter in January 2012 at Disneyland and has started training
one step at a time.
REMEMBER -- you too can raise awareness in your community!! No idea is too small. Every little bit helps. For more information, please
contact Norma at 1-888-776-7776 anytime
JUNE 11, 2011 - A WONDERFUL DAY FOR
A WALK IN THE PARK FOR SCLERODERMA!
...especially in Hamilton where they raised $103,000, in London where they
raised $22,000.00 and in Ottawa where they raised $12,000.00. Hundreds of
walkers participated. This is amazing and the support groups and organizing
committees in these cities cannot be thanked enough for their time and efforts.
Rumour has it, there may be a walk in Toronto next year as well….stay tuned
and think about having a walk in your town. Never too early to start considering.
Team Petey” - Melissa & Jenny Hatcher walked with
family and friends in memory of their father Peter
Upcoming Events 2011!
SEPT 18, 2011 – GOLF TOURNAMENT!
Third Annual SSO Golf Tournament – At Flamborough Hills –
See the Flyers enclosed with your newsletter or go to
www.sclerodermaontario.ca/Upcoming_Events for more
details. We need silent auction prizes and of course, golfers.
Taking Place at the Hamilton Convention Centre:
SEPT. 24, 2011
Scleroderma Education Conference, 8:00 a.m. - 4:00 p.m.
Annual General Meeting - 4:00 - 5:00 p.m.
SEPT. 25, 2011
Support Group Leadership Seminar - 10:00 a.m. - 3:00 p.m.
OCTOBER 16, 2011 – Scotiabank Waterfront
Marathon (5km, ½ marathon& full marathon)
Raise money with virtually no effort (except for all that
running). A favorite event for all. Our own Norma Augustine is running the ½ marathon and Cathy Jeske is running
the full marathon. Please join us on our crazy quests or
consider running with us or starting your own group of
5 km runners or walkers (and yes, walking is a completely
acceptable method of crossing the finish line!).
For more details please
e-mail: cathy.jeske@sclerodermaontario.ca or go to:
www.torontowaterfrontmarathon.com/en/charity/sso
RETIREMENT!! A SPECIAL THANK YOU TO MRS. IRENE GOODALE!!
Many of you know Mrs. Irene Goodale as both a Board Member of
the SSO and as the Editor of SSO’s newsletter, the “Scleroderma
Reporter”. Since the newsletter’s beginning, Irene has performed
this role with much dedication, passion and thoughtfulness. In
supporting persons living with scleroderma, Irene has spent many
hours researching, writing, reviewing, organizing, and encouraging
others to become involved in the newsletter process too. The practical and inspiring articles that Irene has brought to us over the years
through the “Scleroderma Reporter” have helped build awareness
about the importance of scleroderma patient care, education and
research. As Irene retires from the “Scleroderma Reporter”, the
Scleroderma Society of Ontario wishes to acknowledge and thank
Irene for her generous commitment of time, support and encouragement in helping to improve the lives of people everywhere who
are living with scleroderma.
Susan Docherty-Skippen, Patient Educator at the Hamilton
Scleroderma Group will be working with the Scleroderma Society
of Ontario as the new Editor for the “Scleroderma Reporter”. Anyone who wishes to submit an article, photograph, upcoming event
information, or has an idea that you would like to share, please
contact Susan by e-mail at patientinfo@sclerodermaontario.ca or
by telephone at 1-888-776-7776 ext. 40.