Annual Education Event and AGM
September 28th, 2024
8:30 am to 1:30 pm
Tamarack Room in the Qualico Centre, Assiniboine Park
Winnipeg
This is an invitation to register to join us on Saturday, September 28th, 2024 for our Education Event and Annual General Meeting.
Don’t miss this opportunity to get together, meet others in the scleroderma community and learn more together about living with scleroderma.
The topic for our Education Event is Pulmonary Hypertension in Scleroderma. Come and meet Dr. Christiansen and Kim Brunelle of PH Canada.
Please REGISTER HERE before September 19th!
Details and Agenda
This is an in person meeting.
Patients, family members, supporters, medical professionals and allied health providers are ALL welcome to attend.
There is no cost but registration is required by noon on September 19, 2024.
Agenda
| 0830-0900 |
|
Registration | Beverage service |
| 0900-0905 |
|
Welcome | Overview of planned activities |
0905-1000
|
|
Presentation: “Pulmonary Hypertension in Scleroderma”
by Dr. Christiansen |
| 1000-1030 |
|
Break | Beverage and snack service (provided) |
| 1030-1100 |
|
Annual General Meeting |
1100-1200
|
|
Presentation: “PH Canada and Living with PH”
by Kim Brunelle and a PH Community member |
| 1200-1330 |
|
Lunch (provided) |
Location
Tamarack Room in the Qualico Family Centre, Assiniboine Park
330 Assiniboine Park Drive
Winnipeg, Manitoba
Notice of Annual General Meeting
All members of the scleroderma community in Manitoba are hereby notified of, and invited to attend the 2024 Scleroderma Manitoba Annual General Meeting September 28, 2024 to be held during the Education Event.
You will hear the latest update on the activities of Scleroderma Manitoba over the past year and plans for the future.
REGISTER HERE
Consider getting involved!
Participating as a Director on the Scleroderma Manitoba Board is a great way to meet others in the community, learn more about scleroderma and help to continue to provide support to the scleroderma community in Manitoba to make it even stronger.
We are seeking volunteers to fill vacant board positions: President, Vice President, Treasurer and one Director at Large (communications).
The future of our organization depends on filling these vacancies!
Interested? Have questions? Email sclerodermamb@gmail.com.
“Muscle involvement in scleroderma” video available
Rheumatology resident Dr. Shane Cameron’s 2023 Education Event presentation, “Muscle involvement in scleroderma” is available to watch here.
Be sure to check out the other videos on the video page as well!
Participate in SPIN-SELF
Enrollment is now open for SPIN’s scleroderma self-management program. SPIN-SELF is a program designed to provide knowledge and skills for managing physical, emotional and social consequenses of scleroderma.
Participants get access to 9 self-management modules and receive $100.
Fiches éducatives maintenant disponibles en français | Educational sheets now also available in French
Nous continuons d’ajouter de nouvelles fiches d’information sur la vie avec la sclérodermie, et Sclérodermie Québec nous a fourni aussi des versions françaises.
Accédez aux versions françaises ici.
We continue to add new information sheets related to living with scleroderma, and now Scleroderma Quebec has provided us with French versions as well.
Access the English versions here.
SclerodermaNews.com
Scleroderma News is “The Web’s Daily Resource for Scleroderma News.”
It’s a good site to bookmark for the latest in research and information about scleroderma.
Scleroderma Manitoba’s Support Group is there for you.
Scleroderma Manitoba hosts support groups for scleroderma patients, their families, and their supporters.
Upcoming meeting dates and details as well as summaries and resources from past meetings are available here.
Scleroderma Manitoba Research Grants
Information and applications for Research and Professional Development grants are available here.
Welcome to Scleroderma Manitoba
Whether you are newly diagnosed or have been living with scleroderma for some time, or if your spouse or partner, child, parent, or family member has been diagnosed with scleroderma, or if your friend, co-worker, or employee has scleroderma, YOU are a part of the scleroderma community in Manitoba.
This site is here to help you find support and to learn more about scleroderma, current research, advocacy and ways to volunteer.
Click here for information about COVID-19 vaccination for scleroderma patients.
The Bulletin
The Spring-Summer 2024 edition of The Bulletin has arrived. Past and current editions of The Bulletin can be found here.
About Scleroderma Manitoba
Read more about Scleroderma Manitoba and its Mission here.
Research
Find the latest information on scleroderma research here.
Get involved
Check out volunteer opportunities and ways to donate.
What is Scleroderma?
Scleroderma (systemic sclerosis or SSc) is a largely misunderstood chronic disease affecting about approximately 22,000 Canadian and five to six times more women than men are affected by this disease.
Scleroderma is an autoimmune disease, a condition in which a person’s immune system turns against itself by producing antibodies that attack its own tissues (i.e. autoantibodies).
The word “scleroderma” is derived from the Greek words “skleros” (hard) and “derma” (skin) and is characterized by progressive skin hardening.
Scleroderma is characterized by an overproduction of collagen and damage to the blood vessels that causes excessive scarring within the various organs. This imbalance leads to a hardening of the skin (fibrosis) and an alteration of the affected organs.
Moreover, in most cases scleroderma limits the motor skills and dexterity of those affected and causes great physical and psychological suffering since it produces disfiguring appearance-related changes. Learn more.
