Sara Pot

Empower your team with the Family Engagement in Research (FER) Course! Designed to foster meaningful collaboration, FER equips learners with the skills to build trusting relationships and engage effectively in research. youtube.com/watch?v=gypnBK… #FromScienceToSolutions

@SPORAlliance @biochemmama @ATricco @kt_program @KTCanada Agree! It’s an honour to work with @biochemmama on the activities @RareKidsCAN as well.🎉

Member spotlight! Amanda Doherty-Kirby is a valued patient partner of the SPOR Evidence Alliance, and has contributed to many knowledge synthesis projects. Check out her spotlight in our December 2024 newsletter: shorturl.at/LG45U We are grateful for her partnership!

Hear how CanChild has impacted lives, sparked connections, and created change for children, families, and caregivers over the past 35 years. Drop a comment and let us know: What does CanChild mean to you? #CanChild35 #IAmACanChild #35YearsofImpact

And to clarify: I’m referring to the washrooms with adult sized changing beds. One is chained up and the other is in pieces. I can’t recall a time in the last few years where the rooms have been functional. This matter needs intentional problem-solving.

Why is it so difficult to maintain the accessible washrooms at Union Station @metrolinx @cityoftoronto? Have you considered card access to provide responsible use? The floor or a small counter are not safe options for my two teens. 👩‍🦽‍➡️👩‍🦽‍➡️

Hosted a virtual meeting this week with researchers, clinicians and #PatientPartners (1st time meeting for many). One way I've found to level things out in intros: first names only (no titles or degrees) and ask everyone to share a fun fact/favourite hobby. #PatientEngagement /1

@NehiyawGrant Wishing you strength to bear this. May there be comfort in sharing his legacy with others and honouring his life with your family and friends. (We met at an EKO leadership event in 2023, and I’ve been following your work since.)

My heart is heavy as I share that nohtawîy (my dad), Darrel Bruno, made his spirit journey yesterday. He taught me how to hunt, ride a bike, drive a car, barbecue, but most importantly how to be a good human how to be great father. He dedicated 26 years of his life to serving with the RCMP and retired a Staff Sargent, he embodied a steadfast commitment well-being of our communities. Beyond his years in uniform, he was a loving and extraordinary father, a devoted brother, and a cherished mosom. He touched many lives with his unwavering support, his wisdom, and deadly humour. Nohtawîy’s legacy is one of honor, strength, and immense love, and he will be profoundly missed by everyone whose life he graced. I am going to miss you nohtawîy.

I send my kid in NZ a letter every week. Hoping for a speedy and acceptable resolution… I miss my kid and sending the weekly notes has been my fix. @canadapostcorp

@TO_dpr @biochemmama It’s a great piece, Dawn. It’s part of our discussions with the @FERProgram - paired with the work from @MattersEngage. Intentional sharing of important truths from similar experiences keep this conversation current and helpful - thank you!

@biochemmama 👏👍

Happy 6th publishing anni to this #PatientAuthor'ed paper on #PatientPartner compensation. Just heard from a researcher who used it to advocate for paying a patient partner to speak at an event. We've come a long way ...and still have a ways to go... pxjournal.org/journal/vol5/i…

Ontario Recognizes Treaties Recognition Week 2024 Learn more: news.ontario.ca/en/statement/1…

Making Halloween 🎃 more inclusive is the aim of our staff member Hayley. In our latest blog, she details her own struggles ‘celebrating’ Halloween as a kid + how some simple steps can open up doors to making Oct. 31 more accessible for all! 👻 fivecounties.on.ca/our-blogs/

Putting our 'all' into Halloween makes for a more inclusive experience. Haley Hodges of @5CountiesKids shares tricks we can use to make Halloween a treat for all children regardless of their age or ability. kawarthanow.com/2024/10/25/put…

It was an absolute honour to present the Chamber’s Family Lifespan Lecture with my longtime friend and colleague @FieryFrancine. Thank you so much for this opportunity and for helping us to shine a light on the importance of embedding lived experience in research and healthcare.

Approximately two thirds of young adults with disabilities reported their health care needs in the adult system are not being met. Read our report to learn why navigating the adult health care system is #NoPieceOfCake: bit.ly/3NlAQKj

My cousin & fierce champion: Waterloo councillor blasts Ottawa's inaccessibility in letter to mayor | CBC News cbc.ca/news/canada/ot…

We are part of this story with our kids - and so grateful.

As part of my Family Engagement in Research course (@FERProgram) we've been talking about clinical trials. Made me think of KGB, who participated in groundbreaking research. He said, "Having Huntington's is my epic challenge. Being in this clinical trial is my epic response".

The Evidence Alliance has published a resource on writing plain language summaries informed by recommendations from peer-reviewed literature and insights from 11 patient and public partners. Access the resource: sporevidencealliance.ca/wp-content/upl…

Empathy is about understanding another person's point of view, including their feelings and lived/living experiences. It also plays a crucial role in #equitable implementation and working in collaborations. We love this visual that summarizes the empathy lens by @Sonia_Sparkles.