“Canada is propping up its disability system on the unpaid labour of siblings, and pretending this is not a crisis.” “As people with intellectual disabilities and autism live longer, families are expected to absorb the gap between need and support.” www.sasktoday.ca/opinion/opin...

I’ve been writing something for the FER Training Program (ferprogram.ca) for everyone who knows that feeling shared below and keeps showing up anyway. Stay tuned. 🌈 I’ve been thinking a lot about #patientengagement and #familyengagement and where a desire for perfection can seep in. /1

New publication alert! “Does the healthcare system support family-centred service?: linking structural issues in healthcare service delivery to parents’ relational experiences of care” www.tandfonline.com/doi/full/10....

Canada has a seat at the UN table but do disabled Canadians know what it’s about and why it matters? COSP19 is the biggest international meeting on disability rights and it’s happening June 2026. #cdnpolitics #COSP19 #NothingAboutUsWithoutUs #CripLeVote substack.com/home/post/p-...

Hey Canada! Let’s talk about disability and voting power. On the heels of Alberta voting down a potential accessibility legislation, it gets me thinking about where there has been precedent for community action. /1

Public review now open: Help shape Canada’s standard for accessible childcare centres Today, Accessibility Standards Canada is launching the public review of its draft standard on Accessible Childcare Centres. /1

Canada's wheelchair curling team completes perfect Paralympic campaign, claiming 1st gold since 2014 Canadians dethrone defending champion China 4-3, were 1st team to go 9-0 in prelims www.cbc.ca/sports/paral...

Let’s go! Fingers crossed this keeps moving forward. Bill S-212, An Act respecting a national strategy for children and youth in Canada, has now reached 2nd reading in the House of Commons, after having been adopted by the Senate of Canada.

Canada is subject to a four year reporting cycle with UN Conventions like the Convention on the Rights of Persons with Disabilities. There is a lot of misunderstanding of what it is, but it’s a culture of accountability. Rights frameworks don’t create change by themselves. People using them do.

Today marks 16 years since Canada ratified the UN Convention on the Rights of Persons with Disabilities (CRPD). Inclusion Canada will continue to work to ensure that Canada fully implements the #CRPD and delivers on equality and inclusion. It requires sustained leadership, accountability and action.

FDA declines to endorse leucovorin for autism after Trump administration touted the drug as a potential treatment. www.cnn.com/2026/03/10/h...

Effect of Isolation On Mental Health Profiles of Caregivers of Children with Medical Complexity: A Mixed Methods Embedded Case Study This mixed-methods study of caregivers of children with medical complexity found that over 70% experienced below-average mental health during the early /1

One thing we aren’t doing in 2026 is ai accounts posing as therapists giving information on autism. www.instagram.com/p/DVkebtmleA...

Just moved my writing from LinkedIn to Substack! Why giving engagement feedback takes practice and share concrete tips for making feedback more meaningful and actionable from a lived experience perspective. patientpartnerresources.substack.com/p/giving-eng... #patientengagement #familyengagement

It’s important to see this kind of pushback. Research priorities are part of the conversation but meaningful involvement of autistic people and their families need to be part of it too. /1 www.statnews.com/2026/03/03/a...

This blog offers practical suggestions for both organizations and individuals to create supportive environments that prioritize emotional well-being, provide preparation and debriefing, and acknowledge and repair harm when it occurs. www.raemartens.ca #patientengagement #familyengagement

Best team ever to work with. We co-created the update of a survey that asks parents how family-centred their child’s rehabilitation care feels. The new version works well and better reflects clear communication, coordinated care, and support for the whole family www.tandfonline.com/doi/full/10....

I see a copious amount of videos about “stop saying you’re doing your own research!”. It’s a message that’s beginning to move well beyond the point of saturation when we don’t move the conversation to next steps. People need to be ready to hear about studies and know what to do with them.

A word that’s worth knowing in this day and age.

A practical guide for people sharing lived experience stories in research or healthcare spaces, focused on setting boundaries, protecting your wellbeing, and choosing what to share with intention. #patientengagement #familyengagement patientpartnerresources.substack.com/p/protecting...

DICES-L is a framework that recognizes partnership as a journey, not a one-time event. Many people with lived experience partner in research more than once. DICES-L names common phases people may so researchers and partners can better anticipate, flag, and support needs at every stage.

PSA In Alberta you now need to sign up to get public health advisories for your area. It is not clear to me if there will be regular media-social media public health announcements outside this process. See link: www.alberta.ca/publi...

Some #patientengagement and #familyengagement Valentines for your weekend. Are you a community-based participatory researcher? Because you know how to make every voice count. You must be a knowledge user, because together, we’re making a real impact. /1

On #IDWGS, we honour Dr. Kirsty Duncan, a scientist, leader, and lifelong advocate for fairness and representation in research. Her work helped create lasting change in Canadian science, opening doors for women and underrepresented scholars. Her impact continues.

According to the CMA survey, people who followed health advice from AI were five times more likely to experience harm than those who did not. What to do with this information? You are more complex and nuanced than the rectangle in your hand. Proceed with caution.

This is what responsive disability policy looks like. They have a lot of work ahead to build the trust of families. But shout out to all the families who put in years of hard work to get there. The move towards needs based funding rather than diagnosis based is where provinces should be heading.

Tumbler Ridge is a small planned resource community, a winding 90 minute drive from the nearest city of at least 10,000 people. A massive number of people are going to descend there tomorrow. May those that arrive have respect and grace for the unimaginable grief.

This is one example of bipartisan agreement from the survey on who is responsible to take action. Nearly all Canadians surveyed believe that the responsibility to curb the spread of false health information falls to: GOVERNMENTS (90%) SOCIAL MEDIA PLATFORMS (87%) Image from @cma_docs

“To help reduce the misuse and misunderstanding of current science, scientific research needs to be explained in language the public can understand. One method to do this would be to ensure that the conclusions of research are publicly accessible.” www.statnews.com/2026/02/03/m...

Ten Years of Progress in Patient Engagement: A Foundation Built, But Time to Deliver - PubMed pubmed.ncbi.nlm.nih.gov/41601445/

Sir Ian McKellen performing a monologue from Shakespeare’s Sir Thomas More on the Stephen Colbert show. Never have I heard this monologue performed with such a keen sense of prescience. Nor have I ever been in this exact historical moment.TY Sir Ian, for reaching us once again. #Pinks #ProudBlue

Me: Why have headache? Brain: You no drink water! (Pause) Brain: We go drink water now? Me: After one more scroll. Brain: Then headache stay. As lesson.

My book Joy on Joy is officially available through Indigo! This book is a small celebration of joy in the places we don’t always think to look for it. If you’ve ever needed permission hold onto, or redefine joy in your life, this book is for you. Link: www.indigo.ca/en-ca/joy-on...

Makes healthcare policy content. Receives marriage proposal in the comments.

Not everyone thinks about health care until they need it. This series looks at the fact that we all aren't starting in the same place when it comes to understanding the current state of Canadian healthcare. #CanadianHealthcare #HealthPolicy #HealthSystems

Dozens of Nunavummiut braved the cold to stand in solidarity with Greenland and against threats of annexation by the United States. About 90 per cent of its 60,000 people are Inuit.

A synthesis of 43 studies in The Lancet OGW shows no meaningful association between prenatal Tylenol exposure and key neurodevelopmental disorders, aligning with current clinical recommendations for its cautious use in pregnancy. www.thelancet.com/journals/lan...

Not sure what the gift you give yourself is for your four year cancerversary, but I’m gonna say it’s tacos.

New Canadian research sheds light on unpaid caregivers’ health and well-being A national survey of nearly 2,000 unpaid caregivers across Canada found that many are struggling — and some groups are more affected than others. /1

NYP article with a terribly ridiculous headline making the rounds about how a “big butt” may be a sign of autism or ADHD. Of course that’s not what it’s about at all. A 🧵: What it is actually referring to is anterior pelvic tilt. This is a posture or gait measurement, not a body size or body /1

Love these videos. Currently working on an old phonograph cabinet that’s been gutted and I’m converting to a cabinet.

I always love this time of year.

Care mapping is your health story and you get to decide how it’s told. What you share, how you share it, and when you share it matters. Maintaining control of your care map helps protect your voice in complex health systems. #CareMapping #PatientEngagement #DisabilityHealth #HealthEquity

There’s been a lot of frustration expressed online about the decision in Alberta to no longer do the bell ringing in peds oncology The challenge here is that there is an important back story that’s worth understanding about this practice in many hospitals across the lifespan vt.tiktok.com/ZSPGjUacc/

In July 2024, the UN Special Rapporteur on contemporary forms of slavery examined Canada and concluded that sheltered work programs are incompatible with international human rights law. The recommendation was direct: replace them with inclusive employment. /1

A Quebec disability federation has filed a proposed class action challenging sheltered workshops and unpaid “training” programs. The case raises national questions about fair pay, real choice, and what inclusion actually means. Source link in the comments.

New research suggests that not just foods or weather but unexpected changes in your daily routine may raise the risk of a migraine in the next 12–24 hours. www.newsweek.com/scientists-f...

One thing we need to readily acknowledge in conversations like the one below, we do not have a clear science communication pathway for families to not just not receive relevant evidence based information but what misinformation so problematic and why. While topics like this get relegated /1

One subject I don’t think is getting enough attention in Canadian politics is the current reading of Bill S-212. A National Strategy for Children and Youth. This work is going to need to be intentional and will certainly be complex. Let’s make sure what’s done truly helps Canadian kids and youth.

We stand in solidarity with our Jewish community. Be a source of light against hate in this world. Happy Hanukkah.