Research participants wanted. Shaping the online health information ecosystem. Looking for patient influencers who are 18+ and have a minimum of 1000 followers on Instagram or TikTok and regularly share information about their illness/disease. You will receive a $20 gift card from a grocery store or Amazon for your time. Online interviews will be conducted via Zoom for one to one and a half hours. For more info or to participate, contact Milana Leskovac at leskovacm@queensu.ca

Great opportunity for patient influencers!

My heart goes out to Americans tonight. A lot of people depend on their medical insurance to stay alive. Especially disabled people. I worry about you all.

Stroke Awareness Month

June is Stroke Awareness Month in Canada. Late last year, my dad had a stroke. His face was drooping, he had weakness in his arms (more so the right arm), and couldn’t speak. Specifically, he had a basal ganglia ischemic stroke. It must’ve happened in his sleep and by the…

🎗️ Save the Date!
🗓️ May 20 | 🕛 12 PM ET

Join FAC’s expert round table on building strength + resilience with fibromyalgia 💜

Hear from a physio, psychologist & physiatrist.
📌 Sign up: bit.ly/FAC-Round-Ta...

#fibromyalgia #resilience #RoundTableTalks

Being back at home always means being ridiculed for being covid conscious, being told the pandemic is over and covid is endemic like the flu, and generally made to feel like those around me do not care that I am immunocompromised

To #PatientEngagement in research teams: Creating a safe space starts with where you're meeting - hospital meeting rooms may not be the best. If you're worried about the cost of other meeting rooms, consider the library or a community centre, or even meeting at a coffee shop, a park, or online.

"Have you tried Cymbalta / Duloxetine for fibromyalgia, and what was your experience with its effectiveness and side effects?"

Check out Fibromyalgia Association Canada - FAC's Fact sheet at fibrocanada.ca/.../fact-she...

#FAC #education #cymbalta #Duloxetine

Spoke on a panel about patient engagement with CIHR’s Institute of Musculoskeletal Health and Arthritis and am so grateful they made masks mandatory for the in-person event.

As an immunocompromised person, I have never felt so safe at an in-person event before.

This image is a graphic recording of a talk on plain language by Anna Samson and Hetty Mulhall. To the left of the image, some key take-aways are described and accompanied by a range of icons. For example, there is a drawing of a sports field along with the point that plain language is about levelling the playing field. There is also an image of weighing scales, along with the comment that plain language helps to reduce bower imbalances. To the right of the graphic recording is a list of specific tips for writing in clear language. These include: - Aim for grade 8 reading level - Read aloud what you have written - Use simple sentence structure - Get to the point and stick to essential information - Use alt text for images - Consider having more than one format for content such as written, video and audio - Check that font choice is easy to read and use colour contrast tools

Making the case for clear language. Anna Samson @disabilitywithanna.bsky.social and I co-presented at a virtual symposium on the importance of clear/plain language. Our key points are beautifully summarised in this graphic recording by visual alchemist Candace Ramjohn.

Open Science: What do patients or people with lived experience think? My name is Laurie Proulx and I have lived with a chronic condition for most of my life. For the last 15 years, I have been active as a patient partner in research. On March 21, 2025, I am presenting t...

I am presenting at an Open Science event on March 21st & would like to get the patient community involved & influencing how I present the patient perspective. If you have 5 minutes, please consider completing this survey to share your feedback: docs.google.com/forms/d/e/1F... Many thanks!

It’s 2025, and disabled people are still being talked about like it’s 1840.

Again, libraries are stepping up.

Free N95 masks at all #LAPL locations while supplies last.

Also: emergency information and resources.

lapl.org/be-ready?fbc...

Unsolicited writing advice, #17171617:
Don't just write. Read books. Watch films. Look at paintings and sculpture. Play games. Go to plays. Listen to music. Think about how these things make you feel.
Making art is a two-way stream. To make art, you have to consume art.

The captioning on Crave consistently sucks.

As someone with some sort of auditory processing issue, I struggle to know what people are saying and have to concentrate hard and still miss a lot or misunderstand things.

When watching TV, captions help with this problem

“Gradient images of diverse youth smiling and black, white, and orange text that says “We want to hear from you for a study on transition to adult health care! Are you: Between the ages of 18 to 24 years old? Actively or recently transitioning to adult care services? Living with physical or mental health conditions or disabilities? Study Aim: We want to identify the most important factors for a good transition experience that will ensure high-quality care across Canada. Study Benefits: There are no direct benefits to you participating in this study, but your response may help improve transition care in Canada. What would you be asked to do: Three online sessions over a six-week period Two surveys (~1 hour) + one discussion board (~1.5 hours) All participants will receive compensation. To learn more about the study, contact us at qualityindicators.transition@sickkids.ca The Quality Indicators for Transition to Adult Care study is led by Dr. Alene Toulany MD, M.Sc., FRCPC and Dr. Sarah Munce, M.Sc., PhD Click to learn more SickKids Click to participate”

Interested individuals can fill out this online form: answer.rand.org/TakeSurvey.a... and selected participants will be contacted.

If you have any questions, contact Dr. Alene Toulany or a team member at qualityindicators.transition@sickkids.ca or call 416-813-7654 ext. 415528.

a bright yellow square with black writing and Andrew's logo in the bottom right. It reads disabled people who can’t work are still working all the time. We’re working on surviving systems that keep us oppressed while simultaneously trying to maintain a normalcy that is upheld via ableism.

I am disabled by my body. I am not only disabled by society. Even if we fixed all of the societal ableism, my body would still disable me, and I think sometimes disability activism forgets this part.

THIS! It does define me and that’s okay. It absolutely shapes every aspect of my life.

we have gotten way too comfortable not seeing disabled people. so much so that we don't know how to feel when we do see them. I want you non-disabled folks to think about how you might feel when you don't get seen anymore either.

Join the winter FER-YOUTH Course Cost: free!! The FER-Youth Course is a 10 week online course teaching youth, families, and researchers to work together well in research. Starts February 17, 2025, 100% online via Zoom For youth (14-25) with disabilities and/or chronic health conditions, families and researchers. Topics include engagement, ethics, overcoming barriers and teamwork. Accessibility and accommodations support provided. Earn a micro-credential from McMaster University!

🌟 Calling all youth with disabilities and/or chronic conditions! 🌟

Join the FER-Youth Course and learn how to collaborate effectively with researchers in health research. 🧠🤝 This exciting opportunity empowers you to make your voice heard, share your experiences, and help shape /1

💯

This is your reminder to get a library card. They have so many services and basically all of them are free.

You’re not violating a reading rule if you opt not to finish a book that's not resonating with you. Life is finite and we thus have a finite number of books to read. Reading shouldn’t be a chore. You needn’t feel guilty for ensuring that your time reading is spent reading things that you love.

My skin picking has been worse since my father’s passing. It’s wild how much stress affects dermatillomania

At the end of the day, don’t we all just want a bookshelf with a rolling ladder?

me leaving the 18-24 age bracket

Buying books and not reading them counts as reading.
Buying books and not reading them counts as reading.
Buying books and not reading them counts as reading.
Buying books and not reading them counts as reading.
Buying books and not reading th

This is like Twitter but upgraded, I’m actually enjoying it