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Below, you’ll find my writing organized by publication theme. For questions on any specific publication, feel free to email me and I will respond as soon as possible.
Below, you’ll find my writing organized by publication theme. For questions on any specific publication, feel free to email me and I will respond as soon as possible.
Children's Books
Children's Books
Joy on Joy
Joy on Joy
"Joy on Joy" is a love letter to my son, Luke, who passed away in 2020. His unwavering desire to live authentically inspired me deeply, and it's something I want to share with the world. I hope that his story encourages other kids to embrace who they are, as living authentically is the greatest gift they can give to themselves.
Puchase on Amazon: https://a.co/d/00PbYWkt
Puchase on Indigo: https://bit.ly/3MQb5oQ
Patient/Family/Community Engagement Resources
Patient/Family/Community Engagement Resources
Lived Experience Resource Substack Blog
Resources for patient partners and people with lived experience in research and healthcare. Tools, guidance and support for meaningful, healthy partnerships.
DICES-L: Common themes on why or when people roll the dice and choose to engage in research
By Kristina McGuire and Rae Martens
Why does someone decide to get involved in research and what makes them stay? Drawing on patterns we see again and again in patient, family, and community engagement work, DICES-L names six themes that show up across that journey: Discovery, Investment, Catharsis, Empowerment, Sustainability, and Leadership.
This is a set of lenses for understanding the different reasons someone might roll the dice on engagement, at different points in their journey. Download the one-page infographic below to use in your own training, onboarding, or team conversations
Starting Small, and Scaling with Purpose: A Practitioner’s Guide to Starting Out in Patient and Family Engagement in Research
Starting Small, and Scaling with Purpose is a guide made for the people doing patient and family engagement in research.
Right from the start, it’s honest: engagement isn’t a step-by-step checklist. You learn as you go. You make judgment calls in real time, and you get better by working with others who are figuring it out too.
This guide lays out what engagement can look like in the real world. Those first conversations with families in the clinic hallway matter just as much as long-term projects where partners with lived experience work alongside you as co-investigators. The advice doesn't come out of nowhere, it’s based on published evidence, and it breaks things down so you can put these lessons to use, and helps you to take some of the intimidation factor out of such a large concept.
If you’ve been waiting to step in, or you’re craving some guidance to grow what you’ve already started, this guide is for you.
It's free to download. And honestly, starting the conversation is easier than you think.
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