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Leading Through Stories: Empowering Rare Disease Families

In the world of healthcare, storytelling has become an integral tool for communication, advocacy, and education. This becomes even more crucial in the realm of rare diseases, where each family’s journey is unique and laden with profound insights and experiences. Our recent podcast episode features Krystle Schofield, a Common Language Digital Storytelling facilitator, who offersContinue reading “Leading Through Stories: Empowering Rare Disease Families”

Family Centred Care

Way back in December, I shared a little about my experience as a parent representative at the Pediatric Cardiac Intensive Care Society’s Annual Meeting in Miami. As anyone who has been a patient advocate at a medical conference knows there were many great experiences, (see my quick recap below) and there were frustrating experiences. That’sContinue reading “Family Centred Care”

A Digital Storytelling Case Study with Rocky Mountain Adaptive

Removing Barriers Transforms Lives & Creates Lasting Legacy Before creating their digital stories, Rocky Mountain Adaptive was seeking a powerful tool in stakeholder communications and advocacy. Creating digital stories added dimension to their marketing and communications strategies and allowed them to connect with their stakeholders in a deeper, more meaningful way.  When founder, Jamie McCulloch,Continue reading “A Digital Storytelling Case Study with Rocky Mountain Adaptive”

Home

Tonight, I find myself thinking about the word, home. About what it means. About where it can be and who needs to be there. I’ve thought about writing this blog so many times, I actually started writing this in February, but late on a Saturday night the perfect storm of inspiration hit. Quite a fewContinue reading “Home”

Guest Blog: Rett Syndrome Awareness

In honour of Rett Syndrome Awareness Month, my good friend and fellow medical mom, Melanie Birch has written a guest blog. Last spring, our family spent four weeks helping teach our daughter, Ella,  how to ski. Her instructors were from an incredible organization called Rocky Mountain Adaptive. To be clear, they did the teaching. OurContinue reading “Guest Blog: Rett Syndrome Awareness”

21 Weeks: Stories & Advocacy

As a storytelling photographer, it is my goal to make documentary family photography accessible for all medical, special needs, and palliative families. As an educator, medical mom and advocate, my goal is to offer my voice to those working to ensure our government is providing ALL families with appropriate access to education and healthcare. PerhapsContinue reading “21 Weeks: Stories & Advocacy”