FALL/WINTER

2014

The Scleroderma ConnectionSCLERODERMA SOCIETY OF CANADA

SclerodermaHard Word - Harder Disease.By: Jay Peak, Executive Director Tri-State Chapter Scleroderma Foundation

Together we are stronger. June is designated Scleroderma Awareness Month around the world. This year we joined forces across North America to develop an awareness campaign that would let others know about the disease and our cause. Our first ever partnership with the Scleroderma Research Foundation and the Scleroderma Foundation in the USA enabled us to enlist the help of our members and friends across the border to share educational messages with people near and far.

The campaign was based on the idea, “Hard Word. Harder Disease.” This theme acknowledged difficult obstacles we encounter when talking about the disease, such as pronunciation (hard), tissue condition (hard), and the many manifestations of the disease (harder). This imagery opened the door for sharing simple messages that describe what a patient deals with and who scleroderma can affect.

The campaign used several channels to get the message out. Regularly scheduled posts on Facebook and Twitter served as the campaign’s backbone. These posts and tweets included information and a link to a specially created website, SclerodermaAware.org. The website asked visitors to help spread awareness and directed them to any of the three partner’s websites. Additional campaign elements included a widely distributed news release which was picked up by major news outlets. Along with alerting the media, we shared the message at one of the busiest places in North America; the CBS “Super Screen” digital billboard on 42nd Street – Times Square – in New York City.

We believe that the campaign was a success. Through the thousands of impressions gained from the digital billboard, over a million views from Facebook posts and many more from other social media outlets, the campaign met a receptive audience. And many shared it with their friends. A goal of the campaign was to use our network to extend knowledge and to invite others to learn about scleroderma. Through this campaign we found new friends both here in Canada and in many countries around the world.

Based on this success, keep an eye out for a follow-up campaign. We believe that the partnership between the Scleroderma Society of Canada, the Scleroderma Research Foundation and the Scleroderma Foundation is a positive step that makes us stronger as we seek to inform people about our “Harder Disease.”

FALL/WINTER 2014

The Scleroderma Connection

2014 has been a rebuilding year for the Scleroderma Society of Canada—going back to our roots and refl ecting on the work that we have done since we fi rst opened our door in 2001. This past year was the hiring of Anna McCusker, our Executive Director. The next step is to do our jobs well and to serve scleroderma patients well with our newly elected Board for 2014-2015 which is as follows: Maureen Sauvé (President), Michelle Richard (Vice President), Marion Pacy (Past President), Catherine Fortune (Treasurer), Helen Goerzen (Secretary), Mary Beth Clark (Director), Janet Lewis Anderson (Director), Steve Kulakowsky (Director), John Malcolmson (Director), Melissa Patton (Director) Yvon Leveille (Director). Our national offi ce has been moved to Hamilton where it shares the location with the Ontario offi ce. Our job is to assist the provinces. As such, we look towards celebrating Ontario’s 30th year of supporting patients with scleroderma, and Saskatchewan’s 31st anniversary of the Scleroderma Association of Saskatchewan. This year, we want to give special thanks to the Scleroderma Association of Manitoba – and Marion Pacy, for organizing and hosting a truly inspirational Scleroderma Patient Education Conference – theme “An Integrated Approach, Creating a United Front”. Also, a special thanks to Singer/Songwriter “Tenille” who performed songs from her hit album during the conference event.

2014 SSC Conference: Visiting information booths to learn more about scleroderma

2014 SSC Conference: Helen Goerzen, Catherine Fortune, Gillian Little & Susan Dyck

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Patient Advocacy Panel (left to right) Kimberly Watkinson, Gillian Little, Shirley Haslam and Maureen Sauvé.

FALL/WINTER 2014

The Scleroderma Connection

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2014 SSC Conference: Helen Goerzen (SSC Secretary)and Marion Pacy (SSC Past President; Conference Chair)

2013-2014 Scleroderma Society of Canada Board of Directors2014 SSC Conference: Back row (left to right: Michelle Richard, Helen Goerzen, Janet Lewis Anderson,

Catherine Fortune, Melissa Patton, Shirley Haslam, Louise Goulet, Gillian Little). Front row (from left to right: Marion Pacy (Past President), Maureen Sauvé (President)

2014 SSC Conference:Singer/Song Writer “Tenille”

www.tenille.ca

FALL/WINTER 2014

The Scleroderma Connection

Disability Tax Credit ServicesBy Shonna Pepper & Cheryl Kehler

Disability Tax Credit Services2-167 Borebank Street, Winnipeg, MB R3H 1E2

Phone: (204) 221-8628 Toll Free: 1-877-494-2468Fax: (204) 221-4124; Email: dtcs@shaw.ca

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Disability Tax Credit Services specializes in assisting individuals navigate the Canada Revenue Agency claim process.

1. What is the Disability Tax Credit? The DTC is a non-refundable tax credit used to reduce the amount of tax payable on your income.

2. Are you Eligible? You are eligible for the DTC when your qualifi ed practitioner certifi es the form and CRA approves it.

3. Is the credit retroactive? Yes. CRA has a taxpayer relief program that can allow your claim to go back 10 calendar years. You can also apply for a deceased family member.

4. Who should apply? Any individual who has impairment in physical or mental functions that is signifi cant and has lasted for a continuous period of 12 months. The effects of this impairment must also cause you to be markedly restricted in at least one of the following basic activities: walking, dressing, hearing, speaking, feeding, mental functions, vision, elimination (bowel/bladder).

5. Are you a Caregiver? If an adult family member is dependent on you due to impairment in physical or mental functions, you may be entitled to claim the Caregiver Amount.

Disability Tax Credit Services will provide ongoing support throughout the claim process including a full evaluation of the past ten years of your income tax. We submit the calculation of applicable adjustments and transfers to maximize your refund. We also communicate with your physician when necessary and handle all correspondence with Canada Revenue Agency. When looking for experience, education and a professional advocate, contact us. Our goal is to generate the highest and most accurate refund. Should you need advice or have any questions, please contact Sharon & Cheryl at:

FALL/WINTER 2014

The Scleroderma Connection

PG. 5

Soirée-bénéfi ce annuelle de Sclérodermie Québec. En le jeudi 30 octobre 2014 à l’Hôtel Hyatt Regency Montréal, Sclérodermie Québec s’active depuis de nombreuses années à soutenir la recherche et à offrir du soutien moral et médical aux personnes atteintes de sclérodermie grâce aux fonds amassés notamment lors de cette soirée-bénéfi ce. La musique du monde et les ailes de son Euro-Pop, Lynda Thalie, qui aura fait vibrer plus de 15 pays en carrière a signé le hit « Dance your pain Away La Tête Haute ».

Sclérodermie Québec 17th Annual Benefi t Dinner. On Thursday, October 30th, 2014, Sclérodermie Québec has proudly raised $72,000.00 during their 17th annual benefi t dinner. The event took place at the Hyatt Regency Hotel in Montréal. Musical entertainment was provided by Lynda Thalie who sang her single « Dance your pain Away Tête Haut »

FALL/WINTER 2014

The Scleroderma Connection

Towards better care for scleroderma: An update from the Scleroderma Patient-centered Intervention Network (SPIN)By Brett Thombs, Ph.D

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Many people living with scleroderma face daily challenges caused by their illness. Problems such as fatigue, limitations in hand function, visible changes in appearance, and other symptoms can make it diffi cult to manage daily tasks and participate in enjoyable activities. This may cause stress and emotional problems, such as sadness, hopelessness, fear, or anger. Programs exist that help individuals to better cope with symptoms of chronic illness. Elements of these programs may be helpful for people living with scleroderma as well, but these kinds of programs have not been designed and tested to meet the specifi c needs of people with scleroderma. The Scleroderma Patient-centered Intervention Network (SPIN) is an organization of people living with scleroderma, patient organizations, researchers, and health care providers from around the world who are working together to change this. SPIN is a novel research project with the goal to develop, adapt and test programs that help people with scleroderma cope with their illness and manage their daily lives. Currently, SPIN involves more than 50 investigators from 30 scleroderma centers in Canada, the US, the UK, the Netherlands, France, Spain, Mexico and Australia.

Problems faced by people living with scleroderma include fatigue and sleep,

emotions and stress, physical limitations, exercises, concerns about body image and appearance, pain, nutrition and diet. SPIN will ask 1,500-2,000 people with scleroderma from across the world to fi ll out questionnaires regularly through their participation in the SPIN Cohort. This will give important information that will help SPIN in putting together online toolkits that address these problems and support people in their efforts to cope with living with scleroderma.

We have started enrolment of English-speaking people with scleroderma in the study in the spring of 2014. We carefully tested our online data collection system with two hospitals in Montreal and Toronto to ensure it works smoothly. We then expanded the number of recruiting sites quickly, and currently, 17 hospitals in Canada and the US now enroll people with scleroderma under their care in the study. Almost 400 people with scleroderma have already agreed to participate! In addition to English-speaking participants, we have worked to translate the questionnaires to French. French-speaking people with scleroderma will be able to participate very soon. The translations into Spanish and Dutch are also well under way, so that people from more countries can participate in SPIN shortly.

FALL/WINTER 2014

The Scleroderma Connection

PG. 7

In addition to the establishment of the SPIN Cohort, SPIN members are working to develop the fi rst series of online toolkits that will be tested and made available to people with scleroderma in the future. In July 2014, SPIN members from Canada, the US, Europe and Mexico team gathered in Anaheim, California for their Annual Meeting, to work on the development of these toolkits. SPIN partnered with the Scleroderma Foundation’s National Patient Education Conference that took place in

a nearby hotel in Anaheim. The SPIN project is well underway to reach the goals to better understand the problems that are important to the people living with scleroderma, and to develop online programs that support coping with the consequences of the disease! More information about SPIN and its recruiting hospitals can be found on the website www.spinsclero.com or by sending an email to spin@jgh.mcgill.ca.

The SPIN Steering Committee, headed by SPIN Director Dr. Brett Thombs from McGill University in Montreal, Canada, manages the project and ensures input from all stakeholders. In 2012, when SPIN was funded by the Canadian Institutes for Health Research, Dr. Linda Kwakkenbos joined Dr. Thombs’ team in Montreal to coordinate the SPIN project and work closely with the Steering Committee and other SPIN members. Dr. Linda Kwakkenbos, originally from the Netherlands, had just fi nished her four-year PhD project focusing on issues related to quality of life in scleroderma. She has managed most of SPIN’s day-to-day business in the past two years while she was SPIN’s coordinator. During SPIN’s Annual Meeting in Anaheim, in the presence of all SPIN members, Dr. Kwakkenbos was named SPIN’s Co-Director by the Steering Committee, a title that refl ects her hard work and dedication to SPIN. A very well-deserved honor and a very nice moment of celebration for all who were present!

FALL/WINTER 2014

The Scleroderma Connection

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Upcoming Events Calendar

Scleroderma Society of CanadaThe Empire Times Building, 41 King William Street, Empire, 203, Hamilton, ON, L8R 1A2Tel: 289-396-3039; Toll: 1-866-279-0632; Web-site: wwww.scleroderma.ca

The Scleroderma Society of Canada does not endorse any treatment, drug ordiet reported in this newsletter. Please check with your doctor.

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Scleroderma Society of Canada

Scleroderma Society of Canada2014/2015

BOARD OF DIRECTORS

STAFF

Maureen Sauvé PresidentMichelle Richard Vice-PresidentMarion Pacy Past-PresidentCatherine Fortuné TreasurerHelen Goerzen SecretaryMary Beth Clark DirectorYvon Leveille DirectorJanet Lewis Anderson DirectorSteve Kulakowsky DirectorJohn Malcolmson DirectorMelissa Patton Director

Anna McCusker Executive DirectorNorma Augustine Executive Assistant

HappyThanksgiving

OCTOBER

18th - 20th SSC Conference

SEPTEMBER

Summer’s Over – Time to Re-Start Support Groups

AUGUST17th-19th “Stomping

out Scleroderma”– Nashville Conference

JULY

MARCH

SSOntario 30th Anniversary Celebration

Take the Pledgesclerodermaaware.orgMake A Difference

Have You Takenthe Pledge?

sclerodermaaware.orgYou Can Make A

Difference!

APRILMother’s Day

Instead of flowers, send an I LOVE YOU

appreciation donation

MAY

Scleroderma Awareness Month &

Walks

JUNE

Valentines – donate in honour or in memory of your

loved ones

FEBRUARY

Happy New Year!

JANUARY

Happy Holidays

DECEMBERNOVEMBER

PG. 8