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.
