Using Education to Change Lives in Patient Advocacy

The path I took to becoming a patient advocate was not a straight one. For me, an early career in teaching made me realize how education can change a life. From teaching, I moved into fundraising for educational institutions, which ultimately led me to work in healthcare. Before joining Horizon, I was running patient education programs for the Arthritis Foundation for six years. This involved fundraising and educational events within my local community, which allowed me to blend my passion for education and helping patients. These educational programs were eventually implemented across the country and through this, I formed links with many organizations. One of these organizations was Horizon, and when they offered me the opportunity to join their team, I jumped at the chance.

As passionate as I am about disease education and management, it was my daughter’s diagnosis in March 2021 with Type I Diabetes that really brought this into full focus. I am in the position of being on both sides of patient advocacy – personally and professionally. I have been able to see firsthand how important it is to know as much as possible about the condition you’re facing, and how empowering it is to be supported in this knowledge and having the right resources at your disposal.

In my personal life – coming to terms with my daughter’s diagnosis and helping her fight her battle, drawing on all the resources we can muster, has made my work even more important to me. Helping people access healthcare education and asking the question “How can we help?”, and following through, is why I love my job.

It’s been a very difficult time over the past 18 months for so many people in so many ways. And it’s important to keep supporting advocacy organizations and their members. The rare disease community continues to need our help and I am so proud to be part of an organization that stands side by side with people who are faced with rare diseases, before, during and after their diagnosis.

I find myself inspired by the people I work with and their stories. This is what we all respond to – personal connections and real-life stories. I suppose my role at Horizon means I’ve come full circle, using patient advocacy to work with local communities, seeing how enabling people through education makes a difference to the way they approach their rare disease.