annualreport

Scleroderma Society of Canada

2012

SCLERODERMA SOCIETY OF CANADA

ANNUAL REPORT 2012This past year has been another building year for the Soci-

ety. After the tremendous success of the Bi-lingual Na-tional Patient Conference in Quebec City, the board met

for a full day to begin the process of establishing our strategic plans for the next fi ve years.

It was agreed that if we are to be successful in fulfi lling our mission of promoting awareness, providing support and funding research, that we need to:

• Find additional sources of income

• Ensure consistency of messaging provincially and nationally

• Strategically leverage existing provincial programs, educational resources as well as human resources for benefi t throughout the country

We identi� ed the following initiatives:

• Hire an individual to pursue Government and other Founda-tion Grants, as well as identifying and developing other funding sources

• Integrate websites throughout the country, in order to ensure consistency in messaging, and minimize the fi nancial impact of creating and managing multiple sites. This approach while being an educational and fi nancial win/win situation continues to respect the autonomy of our provincial affi liates.

• Reformat the National Newsletter

• Update educational brochures for distribution provincially and nationally

• Identify opportunities to assist the provincial organizations with outreach to patients and their families, and to grow their support base.

Through a job and cost sharing initiative with the Scleroderma Society of Ontario, and with the generosity of Mohawk College, we have been able to hire Linda Marshall. Linda was given a ‘Professional Development Leave’ with 80% of her salary cov-ered by the college. With extremely limited funding, it would

have been next to impossible for us to hire Linda without this agreement between the SSO and Mohawk College. Further to this, a donor has been located who is prepared to fund this initia-tive. Linda has already developed a “planned giving project”, and is in the process of preparing the paperwork necessary for us to begin the process of applying for various grants and founda-tion funding. Brochures for this planned giving program titled “Making a Difference” are available today for distribution. I have little doubt that Linda’s efforts will be successful in moving this organization to the next stage of our development.

Susan Docherty-Skippen is another resource that is being shared nationally. While Susan maintains her position as Patient Edu-cation Co-ordinator with the Hamilton Scleroderma Group, she has recently joined the SSO/SSC job and cost sharing program, and has been developing and updating educational brochures and is responsible for the re-formatted National Newsletter. Copies of the items she has prepared are available today for dis-tribution. Susan’s work in education and patient outreach will continue to be invaluable to us as we evolve with our educational and support activities. We are lucky to have her on board.The process that will lead to a new integrated website has be-gun. This is a long and complex process for those of us who are technologically challenged, and our heartfelt thanks go to Linda Marshall, the Scleroderma Foundation, and Trios College for their advice and direction. We look forward with anticipation to the continued development of this site.

There is still so much work to be done, that we can easily become overwhelmed by the magnitude of the job that lies before us, but with the spirit of co-operation and generosity across Scleroder-ma Societies throughout Canada, the United States and indeed the world I have no doubt that we will build on our successes and improve the lives of scleroderma patients and their families throughout the country and beyond.

We would be remiss if we did not thank the Scleroderma As-sociation of BC for their tireless efforts in staging the 2012 National Patient Conference. The dedicated team put together by the SABC under the leadership of Robyn Fox, Joan Kelly and Bob Buzza have done an outstanding job.

Many, many thanks!

SCLERODERMA SOCIETY OF CANADA

COMPARATIVE BALANCE SHEET 2012

ASSETSCurrent Assets

Chequing/SavingsTD Canada Trust 57,639.80

Total Chequing/Savings 57,639.80

Other Current AssetsShort-term investments 20,000.00

Total Other Current Assets 20,000.00

Total Current Assets 77,639.80

Fixed AssetsComputers 1,139.92

Total Fixed Assets 1,139.92

TOTAL ASSETS 78,779.72

LIABILITIES & EQUITYLiabilities

Current LiabilitiesOther Current Liabilities

GST Payable (145.79)GST/HST Payable (12.57)

Total Other Current Liabilities (158.36)

Total Current Liabilities (158.36)

Total Liabilities (158.36)

EquityRetained Earnings 114,207.87Net Income (35,269.79)

Total Equity 78,938.08

TOTAL LIABILITIES & EQUITY 78,779.72

SCLERODERMA SOCIETY OF CANADA

COMPARATIVE BALANCE SHEET 2012

Scleroderma Society of Canada Profit & Loss

June 2011 through May 2012

Page 1 of 2

COMPARATIVE INCOME STATEMENT 2011-2012

FOR THE YEAR ENDED 2012

INCOME

Interest Earned on Account 59.40Conference Registration 1,740.00

Total From Other Registerd Charities 19,937.36Total Non Tax-Receipted Donations 16,295.00Total Tax-receipted donations 24,922.34Total Other Income 1,654.00

TOTAL INCOME 64,608.10

EXPENSE

Total Patient Education Expense 59,851.01Total Administrative Expense 5,526.88Research Support

Support to CSRG 22,000.00Support to Other Research Group 12,500.00

Prior Period Adjustment

TOTAL EXPENSE 99,877.89

NET INCOME (LOSS) FROM OPERATIONS (35,269.79)

SCLERODERMA SOCIETY OF CANADAPROFIT & LOSS – JUNE 2011 THROUGH MAY 2012

COMPARATIVE INCOME SHEET 2011/12

MINUTES OF THE 28TH ANNUAL GENERAL MEETINGHeld June 16, 2012 at 11:30 at

Ceperley Park, in Stanley Park, Vancouver BC

The 28th Annual General Meeting of the Scleroderma Association of B.C. was called to order at 11:30 am by President Bob Buzza.

1. Adoption of Agenda Kelly/Stach Carried Bob proposed that the Agenda be adopted as circulated. Unanimously approved.

2. Introductions and Opening RemarksBob noted the unique format of this year’s AGM, being held in conjunction with the fi rst annual Scleroderma Ride for Research, hosted by SABC members Rosanne and David Queen, with pro-ceeds benefi tting scleroderma research at St. Paul’s Hospital. He thanked the wonderful team from St. Paul’s who had shown up in terrible weather to support the event, and Rosanne and David’s tremendous team of supporters and volunteers. Heart-felt thanks were expressed to Rosanne and David, who were still riding the 30 Km bicycle route. Their online donations alone have totalled over $8,000 and more good news was anticipated for later in the day.

With the SABC’s focus centered on the national scleroderma conference being hosted in BC from September 28th-September 30th at the Hilton Vancouver Metrotown hotel in Burnaby, this brief AGM has been called to ensure our legal requirements are met. An exciting program is in the works, and this joint event will host the 13th Annual Conference and General Meet-ing of the Scleroderma Society of Canada (SSC). 2012 is the fi rst year the program has expanded to a 2 day format. It will also mark the 6th Annual Joined Meeting of the SSC and the Canadian Scleroderma Research Group (CSRG), as the CSRG concurrently hosts their Annual Scientifi c Meeting. Friday eve-ning will allow a special opportunity for our members to view the latest in CSRG research, meet research students and their supervising doctors, in a wide range of fi elds of study refl ecting the complexities of this complicated condition. As well, doctors and researchers from CaNIOS (Canadian Network for Improved Outcomes in Systemic Lupus Erythematosis) will convene a meeting on September 28th. Thanks to Drs. Dunne & Wilcox from St. Paul’s hospital, and an excellent program of speakers

affi liated with the CSRG, this year’s patient conference will be truly memorable. The program has been designed to appeal to both SABC members and those with related conditions as well, such as lupus, and offers question and answer opportunities with every session.

The national Scleroderma Interactive Navigator study focus group, in conjunction with the Lupus Interactive Navigator study being conducted by Dr. Paul Fortin and teams at UBC and Laval, postponed from earlier this year, has now been rescheduled for June 26th, and is seeking participants. Details were provided.

Those members of the SABC Board who were in attendance were introduced, and Bob welcomed Grant Dustin who has moved to BC from Alberta. Grant, together with his late wife Maie, volunteered for many years in Calgary, and played a key role in the founding of the Scleroderma Society of Canada and as its co-treasurer for many years. Bob also welcomed some new faces to our meeting, and thanked them for joining us, as well as folks who had travelled a distance to attend in such poor weather.

3. Adoption of the Minutes of the 2011 AGM Rak/McPhee Carried Bob introduced a motion to adopt the Minutes of the 2011 AGM.

4. Approval of Treasurer’s Report Mueller/Dustin Carried

Ensuring copies of the Annual Financial Report and Balance Sheet for the period May 1, 2011 through April 30, 2012 had been distributed, Bob provided a verbal summary of key items. Noting that behind the fi gures lay the stories of donors, both large and small, who make it possible for a volunteer organiza-tion like the SABC to continue its work.

Bob offered tribute to the SABC’s key fundraisers, which was warmly received:Dr. Dhar and Mrs. Harv Dhanda, and daughters Kiran & Meera. In 2011, big sister Kiran spoke movingly of her late grand-

mother Gurmej, at Meera’s fi rst birthday party fundraiser which raised $4,000. The 2012 Gurmej K. Dhanda scholarship has been once again awarded Dr. Ada Man, whose goal is to become a rheumatologist in BC, perhaps at the Clinic. The 2012 Gurmej K. Dhanda Research Award is awarded to the St. Paul’s hospital Scleroderma Clinic, under the direction of Dr. Jim Dunne. They have also made a commitment to the national conference. Dr. & Mrs. Dhanda have been outstanding supporters of our cause.Denise Kostash and members of the Spencer family, who have organized the Spencer Skate fun’raiser for 8 years; and to De-nise individually, for her initiatives and networking with Sand-man and the Sutton Place hotels have been so appreciated. The Spencer family is dedicating the funds raised this year to Sep-tember’s national conference.And to Rosanne and David Queen, for their tremendous success with their inaugural Scleroderma Ride for Research.

Bob then provided a basic overview of the annual fi nancial re-port and balance sheet, prepared by treasurer Joanne Shale, and thanked Joanne, who could not be present, for her work and dedication. The fl oor was opened to questions, and it was then moved and carried unanimously that the fi nancial reports be ap-proved.

5. Old/New BusinessThere being no new business to conduct, and with regular up-dates on current business appearing in the newsletter, the meet-ing continued on to the elections.

6. 2012/13 Board ElectionsDianne McPhee provided an update on member-at-large Elaine Dupuis, whose medical career has taken her to Calgary for her residency in dermatology. As Elaine leaves us, she takes with her

our best wishes and hopes that she will return to BC.

Bob then presented the election slate. The Executive slate was presented as follows: Bob Buzza Returning as president for a fi nal yearMelanie Rak Returning as 1st Vice PresidentJoan Kelly Returning as 2nd Vice President and continuing as newsletter editorRobyn Fox Returning as SecretaryJoanne Shale Returning as Treasurer

The fl oor was opened to further nominations. There being none, the Executive was re-elected by acclamation.

The process was repeated for Members at Large, with the fol-lowing Board members offering to stand for re-election:Dianne McPhee, Nadine Morton, Tom Mueller, Melissa Patton and Jeannette Stach. Bob noted that Rosanne Queen has of-fered to stand for election, and that Grant Dustin has agreed to join the Board in an advisory capacity, as a member at large “emeritus”. The fl oor was opened to further nominations. There being none, the Members at Large were then acclaimed by unan-imous vote.

7. Adjournment Mueller/Kelly CarriedThe meeting adjourned at 11:39 am.

SCLERODERMA ASSOCIATION of BCBox 218 Delta Main,Delta, BC V4K 3N7

Te1: 604-940-9343 • Toll-Free: 888-940-9343 • Fax: 604-940-9346E-mail: scleroderma@telus.net

Website: www.sclerodermabc.ca

SCLERODERMA ASSOCIATION OF SASKATCHEWAN

PROVINCIAL REPORTTHE SCLERODERMA ASSOCIATION OF SASK. HAS A NEW WEBSITE. PLEASE VISIT US AT: WWW. SCLERODERMASASKATCHEWAN.CA

Our Newsletter is published twice a year and is sent to 87 members.

This includes unpaid members and paid members.

This year was very disappointing for Saskatchewan patients in the CSRG Registry. The Saskatchewan Rheumatologist is not able to continue seeing patients, therefore, Saskatchewan patients were dropped from the Research Registry.

At our Spring meeting we decided to spread awareness by holding a Steak Night Fundraiser at a local Brewpub in Regina. This was a very successful adventure. We sold 125 tickets and raised over $2,000. We have a new Awareness Brochure and fi nd this an attractive way to promote awareness. They have been placed in Medical offi ces and particularly with our Rheumatologist to give to newly diagnosed patients. Our guest speaker spoke on ‘Living Well With Chronic Conditions’. This program was devel-oped at Stanford University in California and is now being presented in several Provinces in Canada. The program consists of six, two hour classes, where patients are taught to deal with symptoms such as fatigue, shortness of breath, pain, depression, stress and emotions.

We have 5 members attending the National Convention in Vancouver in September.

Our Fall meeting will be held in October, it is an election year, and our guest speaker is Dr. Todd Sojonky, PH.D., R.D. Psychologist.

This report respectfully submitted:

Louise GouletPresident

SCLERODERMA SOCIETY OF ONTARIO

REPORT TO THE NATIONAL CONFERENCE ON THE LAST

YEARS ACTIVITIESThe SSO has had a tremendously active year. Our key ar-

eas of research, education and awareness have been sup-ported in the following ways.

Research:For the year ended April 1st, 2012 the SSO invested a further $452,600 into research programs throughout the country. We have supported the work of:

•CSRG •HSG •SPIN •Dr Andrew Leask •Dr Jean-Luc Senecal

Education:Patient, family members, caregivers and medical professional education is critical if we are to improve the quality of treat-ments and quality of life of our patient community. Towards that end, the SSO in conjunction with the Hamilton Scleroderma Group (HSG) held a joint patient/medical professional Continu-ing Medical Education Conference this past October. This was a tremendously well attended conference and the fi rst of its kind held in Ontario. The HSG continues with its mandate of education along with research, by actively providing educational support to patients, and developing CME’s for Medical Profes-sionals. Including our most recent educational conference, that highlighted the work of Dr Kevin Smith who presented the latest fi ndings on the use of botox for Raynaud’s.

Support Group and Support Group Leader development has also been a strategic priority as we attempt to ensure that the experience of our patients at the support group level continues to improve. To this end, we held a support group leader confer-ence where we rolled out our new support group leader manual.

This educational session was followed by a number of support group leader conferences.

Public Awareness:Public Awareness remains a challenge for us, as the fi nancial resources we have at our disposal make it diffi cult to justify the large costs associated with big awareness campaigns. While we have continued to leverage our fundraising activities with free media via community newspapers, radio talk shows and cable television programs we have yet to make any signifi cant inroads. Our use of Social Media needs to improve, to leverage this low cost and highly utilized medium.

Fundraising:Of course, none of this would be possible without the tremendous efforts of our supporters in organizing and running the various fundraisers that occur throughout the province. These events include:• The Mississauga Gala, • “Walk in the Park” events held in Hamilton, London, Ottawa and for the fi rst time this year Toronto• Golf Tournaments • The Hamilton Golf Tournament• The Carpenters Union Golf Tournament• McMaster University Student’s Association Frosh Week Two events• Disney Marathon participation of Lynn & Jeanette Brunelle Are among the major fundraisers that have been occurring annually that support all of these efforts.

With the continued support of these individuals, and with our intent to garner provincial funding to support our efforts, we expect the coming year to grow on the foundation that we have been establishing.

SCLÉRODERMIE QUÉBEC

SCLÉRODERMIE OVER THE 2012 YEAR...

Sclérodermie Québec has been busy with a variety of events over the past few months and it will be going on until the end of the year!

Our association is always very active all over the province and together with our volunteers we are organizing meetings and conferences to provide people suffering from scleroderma access to fi rst-line information sessions.

The following are a few of the conferences we hosted: • La Sclérodermie tout simplement. With guest speaker Doctor Ariel Masetto, rheumatologist from the Centre Hospitalier Universitaire de Sherbrooke.

• La santé-dans-la-maladie : réconcilier la souffrance et le bien-être pour mieux vivre avec la sclérodermie. With guest speaker Mrs Édith Ellefsen nurse, Ph.D., Workshops with physiotherapists and nutritionists.

• Meetings to acquaint people with scleroderma and our association.

Furthermore, over the coming months, Sclérodermie Québec will be planning several benefi t events in Trois-Rivières, Montreal or Quebec City.

There will be also a conference featuring Doctor Tamara Grodzicky, an active member of Canadian Scleroderma Research Group (CSRG) and CHUM Scleroderma Research Group (GRSCHUM), to be held in next October in the Montérégie.

All of our activities and details can be viewed on our website in our blog section!

Our next Challenge…

Sclérodermie Québec will launch the “Défi 100 000 amis pour vaincre la Sclérodermie” (100,000 Friends Challenge to End Scleroderma). This is a fundraising campaign that will allow us to fi nance and advance scleroderma research. People can already make a donation going to our www.sclerodermie.ca and make a contribution to help us end scleroderma.

Contributions to Sclérodermie Québec support promising scientifi c and medical projects as well as innovative research studies. Until new therapies are made possible by advances in medical research, people living with scleroderma continue to have hope, knowing that researchers are working every day on their behalf.

SCLERODERMA SOCIETY OF THE ATLANTIC PROVINCES

SCLERODERMA NOVA SCOTIA

In 2010, the Scleroderma Society of Canada held its annual conference in Halifax, NS. As a result of hosting the National conference the Nova Scotia support group was able to recruit new individu-als living well with scleroderma as well as their family members and friends. Our support group

grew and we began to focus on programs and educational materials that could better serve patients in Nova Scotia living with Scleroderma.

The Nova Scotia support group held a planning meeting in November 2011 to talk about what they would like the new Nova Scotia group to do in terms of programs, fundraising and public awareness. In May, 2012 the group offi cially formed as Scleroderma Nova Scotia and opened a bank account. In June, 2012 the group co-ordinated it’s fi rst augural “Walk in the Park for Scleroderma”. It was a great success.

Plans for Scleroderma Nova Scotia Fall/Winter 2012 as well as Spring/Summer 2013 include some of the following projects:

• A specialized Art Therapy group session designed uniquely for Scleroderma patients.

• Continued monthly support group meetings, having guest speakers come to talk

to the group from time to time.

• To organize a ½ day mini conference or public lectures on topics relating to Scleroderma.

• Continued work with various health professionals, students from Dalhousie University’s

professional health schools, and work on specialized projects with health professionals.

• Co-ordinate a six week Chronic Disease Self Management Program (aka the ASMP Arthritis

Self Management Program), directed solely to various Scleroderma challenges.

• Organize a public forum in November on the benefi ts of Recreation Therapy in the

management of Scleroderma.

• To establish a Scleroderma Nova Scotia website.

• To continue to maintain our Scleroderma Nova Scotia facebook page.

SCLERODERMA SOCIETY OF CANADA

ANNUAL GENERAL MEETINGHILTON HOTEL, QUEBEC CITYSATURDAY, OCTOBER 29, 2011

AGENDA

Welcome & IntroductionsMaureen Worron-Sauve

President

Treasurer’s report

Catherine FortuneTreasurer

Election of the Board of DirectorsMarion Pacey

Director

Welcome New MembersMaureen Worron-Sauve

Thank Everyone for attendingRobyn Fox

Adjournment

SCLERODERMA SOCIETY OF CANADA

BOARD OF DIRECTORSSLATE OF OFFICERS PROPOSED

PRESIDENT: Maureen Sauve

PAST PRESIDENT: Marion Pacey

VICE PRESIDENT: Normand Ricard

TREASURER: Catherine Fortune

SECRETARY: Helen Goerzen

DIRECTORS AT LARGE:

Gillian Little

Louann O’Dwyer

Louise Goulet

Mary Beth Clark

Michelle Richard

Shirley Haslam

Robyn Fox

BOARD ADVISORS:

Appointed not Elected

WEBMASTER: Ron Gullickson

RESEARCH LIASON: Krisstina Davis

DEVELOPMENT CONSULTANT: Linda Marshall

Scleroderma Society of Canadawww.scleroderma.ca

Scleroderma Society of British Columbia

Sclérodermie Québec

Scleroderma Society of Ontario

Scleroderma Society of the Praries

Scleroderma Society of the Atlantic Provinces