Activity Reports

Our Annual General Meeting and Education Event was held on Saturday September 23, 2023 from 9:00 am to 1:00 pm at the Canad Inns Fort Garry.

It was an opportunity to get together, meet others in the scleroderma community and learn more together about living with scleroderma.

Read or download the minutes of the meeting here.

On November 21^st, members of Scleroderma Manitoba’s Board of Directors along with scleroderma community members joined Selkirk MLA, the Hon. Alan Lagimodiere, as he issued a Private Members Statement about Scleroderma Awareness. Read the full statement as well as his personal Facebook announcement below, or download it here.

Private Members Statement read at the Manitoba Legislature
Nov 21, 2022

Scleroderma Awareness

Hon. Alan Lagimodiere, Minister of Indigenous Reconciliation and Northern Relations:

Today I bring awareness of scleroderma, a complicated, aggressive autoimmune disease, and to acknowledge the bravery of individuals who live with scleroderma. There is no known cause of scleroderma and no two cases will present alike, making diagnosis difficult and the need for many specialists to be involved in the diagnosis and treatment. Each person’s journey living with scleroderma is unique.

Women are affected five to six times more than men.

Scleroderma refers to all types of sclerosis, both skin changes and changes to other tissues and organs of the body. Raynaud’s, stiffness in hands, joint pain, fatigue, trouble sleeping are all early symptoms. Systemic sclerosis causes the most severe outcomes.

As scleroderma progresses, it leads to an overproduction of collagen in connective tissue. Scleroderma is cruel, and since connective tissue is everywhere in the body, no organ is immune from the devastating effects of scleroderma.

Advancing stages of scleroderma result in damage to the heart and lungs, circulatory problems, high blood pressure, shortness of breath, heart failure, kidney failure and digestive problems and malnutrition. This leads to a significant decrease in quality of life and life expectancy.

No cure is available, so symptomatic treatments are employed to help cope with daily functions and try to slow the progression.

Life-altering decisions for individuals and their families need to be made as conditions develop and evolve. Those diagnosed know the road is not easy, but choose to not let scleroderma define who they are. They should be admired for their courage to live each day doing the things they love despite the obstacles they face.

I ask my colleagues to please rise and recognize those living with scleroderma, including my wife Judy and members of Scleroderma Manitoba. Thank you for your ongoing work and your support.

I now table their names for Hansard.

Scleroderma Manitoba: Jo-Ann Lapointe McKenzie, president; Helen Goertzen, past secretary; Crystal Smith, member at large; Debbie Robitaille, member at large; Linda Cassell, support group team member; Judith Lagimodiere

Scleroderma Manitoba held its Annual General Meeting on Saturday, October 15^th, 2022.

A message from Jo-Ann LaPointe McKenzie, President of Scleroderma Manitoba:

“The Scleroderma Board of Directors is an amazing team of volunteers. These dedicated individuals work to sustain our organization so that you can depend on us for support as you navigate the challenges of living with this disease each and every day.

Our new strategic plan was presented at the October 2022 Annual General meeting. In addition to the four pillars that we had identified for our organization we have now articulated our vision, mission and supporting values.

Over this past few months, the terms of three of our hardworking board members have come to an end. Please see my farewell messages to Marion Pacy (long serving President/Past President), Jereleen Brydon (Support Group Leader and Communications), and Linda Clark (Communications, Website, and social media). Our Secretary, Vienna Peters, will sadly not be able to complete her term. We are thrilled to welcome Dolores Krahn as a Member-At-Large. 

We have four vacancies to fill: Vice President, Secretary, and two Members-at-large: Support; Communications; and Education. If you or anyone in your circle would like to join us we would be delighted. We meet via Zoom for about one and half hours every 2 months.”

A fond farewell to our outgoing Directors

Marion Pacy

Marion has a special place in our organization. She served as the president for over 20 years followed by six years as past president. Marion joined the Scleroderma Manitoba community in the earliest days and coordinated the gathering together of people who had this disease to meet one another, share their experiences and offer support. She led us to the creation of the formal association and then through the steps for continuance when the Canadian Not-For-Profit legislation was changed in 2009.

Marion represented us on the national stage as the president of Scleroderma Canada and facilitated the transition to our alliance with Sclérodermie Québec and the Scleroderma Association of British Columbia. She worked with many volunteers over the years coordinating and hosting local and national scleroderma conferences and assisted Lindsey Ingram and Laura Smirnov as they created our annual walk campaign in memory of their mother. 

In addition to working with our alliance partners to establish our website, Marion spent many hours presenting information on scleroderma to various groups.  She is a charter member of our organization and we are truly thankful for her commitment and dedication, particularly as she too navigated the challenges of living with scleroderma each and every day.

While Marion will be missed, she has earned her well-deserved retirement.

Jereleen Brydon

Jereleen joined our board in 2016 and having served three terms, is now moving on to other exciting possibilities. Jereleen completed the Support Group Facilitator training developed and provided by the Scleroderma Patient Intervention Network (SPIN). Under her leadership our support group activity has grown steadily as those who participate find a safe place to meet one another, share their experiences and challenges, and learn about this challenging disease.

Over her tenure as a board member Jereleen also led the Education programming through hosting our annual education events. She designed a welcome package that is sent to people who are newly diagnosed with scleroderma and offered each person one on one support.

Jereleen’s considerable professional experience in communications, along with that of Linda Clark, led to the creation of an annual communications plan and the execution and delivery of newsletters, emails, and advertising. Normally a strategic plan is created in a board retreat type format but Jereleen used her past experiences in organizational development to guide us expertly through the process. This work was completed with her leadership skills using a virtual format.

We are so grateful for her generous spirit, her hard work, and her resilience in the face of all the personal challenges that come with scleroderma. She will be missed but has generously agreed to assist our new support group team during a short transition period.

Linda Clark

Linda joined our board in 2019.  She is an amazing volunteer with considerable expertise in communications, advertising, organizational development and strategic planning. Linda was a key team member in writing our first by-laws which were adopted in 2020. 

She has recruited a powerful team of volunteers to create our digital presence. With her connections in the community she recruited Jennifer Clarke who has worked with Linda to streamline our website, maintain the content, and improve the functionality of our site. In addition she has developed messaging for Facebook creating a social media presence with current and timely messages.  Linda included Patricia Garrod on the communications team and now Patricia creates a regular presence for us on Twitter. 

Linda and Jereleen worked together to create an annual communications plan, budget and content, and worked many hours on the design and development of several issues of the Bulletin to ensure that the content was interesting, meaningful and timely. The work she has accomplished in her time on the board has been phenomenal. Linda has created templates and guidelines to assist the incoming director to carry on this vital work using the infrastructure she has created.  

We have been honoured to be the beneficiaries of her vision and expertise.

Scleroderma Manitoba held its annual Education Event on Saturday, October 15^th, 2022.

The topic for this year’s Education Event was the diagnosis, treatment and management of interstitial lung disease. Our two expert speakers, Dr. Terry Colbourne and physiotherapist and repiratory educator Dana Kliewer, shared the current trends in diagnosis, treatment and management to help us better understand this serious complication of scleroderma.

A video recording of the speakers’ presentations can be viewed here.

Updates on the activities of Scleroderma Manitoba over the past year and plans for the future were shared at the AGM. Financial, Walk 2022, and standing committee reports were presented in this brief meeting. 

This years walk was a great success thanks to participants both virtual and in-person, our donors, sponsors and volunteers.

Watch the video for highlights from St. Vital Park here.

On Saturday, October 3, members of the Manitoba scleroderma community joined our Virtual Education conference to learn about progress in scleroderma research and implications for patients in Manitoba.

Keynote speaker Dr. Janet Pope (chair Rheumatology Department at St. Joseph’s Health Care, London ON), discussed progress that has been made in alleviating or slowing progression of scleroderma.

We learned how results from the Canadian Scleroderma Research Group, which follows a registry of approximately 3000 scleroderma patients, are being used to uncover useful trends and information for scleroderma researchers.

Dr. Pope was joined by Drs. Ada Man, David Robinson, (both of the University of Manitoba) and Sabrina Hoa (University of Montreal) for a panel discussion during which they provided their perspectives on what has been learned, what they hope to learn in the future, and what excites them about potential progress in scleroderma treatment.

Each doctor described their own research initiatives which ranged from examining the early use of immuno-suppressants to reduce lung fibrosis, to examining indicators to better predict rate of disease progression, to the benefits of multiple medications in treating scleroderma, to the role of cannabinoids in scleroderma treatment, to the possibility for pragmatic trials within a clinic to compare different treatments among patients.

Overall, the discussion was insightful, and gave us lots to hope for in the future.  

Scleroderma Manitoba thanks Drs. Pope, Man, Hoa and Robinson, for their time and openness during our conference, and for the care and support of scleroderma patients they show every day. We also want to thank Janssen for their support in holding the Education Conference.

Missed the conference? A recording of the conference is available here.

Our annual general meeting was held virtually, during the Education conference. Attendees heard reports regarding finances, the 2019 fund-raising walk, support groups, and board membership.

Jo-Ann Lapointe McKenzie will take on the role of President, while Marion Pacy, long-time board member and president becomes Past President. Helen Goerzen remains as secretary. We welcome Lisa Thiessen to the board in the role of Treasurer. Members At Large are Jereleen Brydon (Support Group Leader), Rob McKenzie, and Linda Clark.

In addition, revised By Laws for the organization were adopted at the AGM. Thank you to Linda Clark, Rob McKenzie and Jo-Ann Lapointe McKenzie for your work in drafting the new By Laws, which are available here.

The board extends our deepest thanks to Jackie Morin (past Treasurer) and Ron Morin (Director), long-time board members for your dedication and service to the scleroderma community.

We adapted in a changing world

In light of the situation with COVID-19, Manitoba’s 6th Annual Walk for Scleroderma format changed.

Scleroderma Manitoba followed the government’s guidelines and did not hold the walk at St Vital Park, as it had been for the previous 5 years. Since it is still very important to raise awareness & funds, we came up with an alternative, a virtual event!

Participants kept their own tally throughout the month and walked at their own pace in a safe setting, practicing social distancing.

The fun continued afterwards when everyone shared how they participated, with pictures and videos.

June Awareness Walk results

Our June 2019 awareness walk was highly successful! Thanks to the generosity of our participants and donors, we raised over $30,000. This success enabled us to contribute $20,000 to the Health Sciences Centre.

There are currently two major protocols for stem cell transplants, one that involves very high doses of cyclophosphamide while the alternate protocol uses lower doses of cyclophosphamide combined with radiation treatment. It appears the protocol using radiation may be less toxic to the patients and possibly more effective.

The current project we are supporting, led by Dr. David Robinson, is the set up of the more effective protocol to provide a better treatment for scleroderma patients in Manitoba. 

View more photos