In this month’s newsletter:
- Rare Rheumatic Disease Drop-In
- CAPA Mini-Survey
- What have we been up to?
- Awareness
- Research Opportunity
- Useful Resources
Rare Rheumatic Disease Drop-In
Join us on Rare Disease Day, this Friday, February 28th at 3 PM EST for an informal drop-in about rare rheumatic diseases!
CAPA Community members Natalie Boivin and Janet Gunderson will share some of their experiences and open up the discussion for you to drop in and share if you’d like.
CAPA Mini-Survey
Attention all people living with or affected by arthritis! We need your input to help guide us in selecting the topics for a new Lived Experience educational series. Tell us what matters most to you in just 1 minute—your insights will guide us in selecting topics that truly resonate.
Attention à toutes les personnes vivant avec ou affectées par l’arthrite ! Nous avons besoin de vos commentaires pour nous aider à sélectionner les sujets d’une nouvelle série éducative sur l’expérience vécue. Dites-nous ce qui compte le plus pour vous en 1 minute.
What we have been up to?
Joint Effort: Physical Activity in Arthritis Webinar
Last Saturday, we held our webinar on movement and arthritis. Participants included people who have lived experience with arthritis and two physical activity specialists who discussed how to incorporate movement into one’s life when one lives with arthritis.
Keep an eye out for the recording, which will soon be available on our YouTube channel.
CAPA at the Canadian Rheumatology Association’s Annual Scientific Meeting
CAPA’s President and Managing Director, Linda Wilhelm and Laurie Proulx are attending the CRA ASM in Calgary, AB from February 25-Mar 1. They will be participating in podium and poster presentations and co-hosting an event alongside other patients, researchers, and clinicians.
Updated EULAR Recommendations for Involving Patient Partners
CAPA’s Vice-President, Dawn Richards was involved in updating the European Alliance of Associations for Rheumatology (EULAR) recommendations for the involvement of patient research partners in rheumatology research: 2023 update.
Awareness
Heart Month
Cardiovascular Disease & Arthritis Webinar
Did you know that arthritis increases the risk of cardiovascular disease? Learn more about how inflammation affects the heart and what you can do to live heart-healthy by watching our webinar on Cardiovascular Disease and Arthritis. Featuring CAPA Medical Advisory Committee Member, Dr. Bindee Kuriya.
Black History Month
Rheumatoid Arthritis Care Experiences of Black People Living in Canada: A Qualitative Study to Inform Health Service Improvements.
The theme for Black History Month this year is Black Legacy and Leadership: Celebrating Canadian History and Uplifting Future Generations. CAPA Board Member, Therese Lane is one of the authors of this paper that explores the RA experiences of Black people living in Canada. Read the paper here.
Research Opportunity
Juvenile Idiopathic Arthritis Parent/Caregiver Study
Are you a parent or caregiver of a child with polyarticular juvenile idiopathic arthritis? Share your experience in a one-hour Zoom interview and receive a $25 gift card of your choice. Email Taiye Alawiye to sign up or scan the QR code to the left.
Surveys on Rheumatoid Arthritis
A research project at the University of Cambridge is investigating the impact of autoimmune diseases on health and quality of life, with a special emphasis on rheumatoid arthritis (RA).
Currently, there is a significant lack of data on RA, particularly in areas related to patient experiences and hormonal influences (especially regarding managing menopause with RA). Addressing these gaps is crucial for advancing understanding and improving care for this community.
This research is led by Dr. Melanie Sloan, a Cambridge academic and patient advocate, with a multidisciplinary team of experts. If you have any questions or need more information, please do not hesitate to contact Dr. Melanie Sloan or Kaira Kuhu Naidu.
The University of Cambridge is hosting two surveys to learn more:
Surveys on Telerehabilitation and Access
Have you received physical rehabilitation, or been a caregiver who has helped a loved one with their physical rehabilitation, in:
- Physiotherapy
- Occupational therapy
- Speech-language pathology/ Audiology
- Neuropsychology /Psychology
- Vision therapy
- received at least one session via telerehabilitation or
- never used telerehabilitation but would like to give your opinion about it or
- helped a loved one with at least one telerehabilitation session
Professors Dahlia Kairy and Anne Hudon from the University of Montreal are conducting a pan-Canadian study on telerehabilitation. The survey is confidential and takes 15-20 minutes. Answer the survey to enter a draw to win a $100 gift card.
Useful Resources
Medical Cannabis Webinar
Last April, CAPA hosted an educational webinar and panel discussion on medical cannabis and how it can help with arthritis symptoms. Perspectives included:
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- someone with lived experience of rheumatoid arthritis
- a family clinician who has worked in clinical pain medicine and advised the Canadian government on cannabis
- and two pharmacists who are co-founders of a pharmacist-led cannabis consulting company.
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Rheumatoid Arthritis and the Rewards of Staying Active
Carole Silvera shares her experience living with rheumatoid arthritis, focusing on the mind/body connection, and the benefits of remaining in a habitable zone. Read more here.
Move your way with RA: Practical tips to move through your challenges and stay active!
Dr. Manuel Ester, a physical activity specialist who works with rheumatoid arthritis patients shares three practical tips for moving with arthritis. Read more here.
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