From Corporate to Advocacy: My Journey with Autoimmune Disease
I’m a marketing and communications professional with a deep passion for patient advocacy. Being able to integrate these two aspects of my life has been incredibly fulfilling. I had spent a very large part of my career in corporate marketing and communications while also volunteering for 13 years as a patient advocate with a national cancer organization. Advocacy has always been close to my heart, but when I was diagnosed with celiac disease, it became personal in a whole new way. Suddenly, I wasn’t just supporting a cause—I was part of a community I hadn’t even realized existed. That’s when I knew it was time to take the leap from corporate to full-time patient advocacy. Now, at the Autoimmune Association, I get to channel my passion into making a real impact for others navigating autoimmune disease.
Why the Autoimmune Association?
The Autoimmune Association resonated with me because my celiac diagnosis was so recent. ‘Autoimmune’ had never been a word I identified with before, but suddenly, it became central to my life. I had heard the term before, but I didn’t realize there are more than 100 autoimmune diseases, such as thyroid eye disease (TED), impacting over 50 million Americans. I was shocked by the statistics — the sheer prevalence, the lack of awareness and understanding (even within the medical and scientific communities), and the limited resources available to patients. Once I grasped just how widespread and underrecognized autoimmune disease is, I knew this was exactly where I needed to be.
The Autoimmune Association: Leading the Fight for Change
Autoimmune diseases are often misunderstood, misdiagnosed, and underfunded. That’s why the Autoimmune Association leads the fight against autoimmune disease by advocating for better healthcare policies, advancing critical research, and empowering patients with the resources they need.
Advocacy
Advocacy plays a crucial role in creating a better future for people living with autoimmune diseases. Through our advocacy efforts, we push for policies that improve access to care, enhance healthcare affordability, promote health equity, and increase research funding. We also work to ensure that healthcare decisions remain between the patient and provider, rather than being dictated by insurance companies or bureaucracy.
Education and Support
A new autoimmune diagnosis often brings more questions than answers. What does this mean for my daily life? What treatments are available? How do I find the right doctor? Will my symptoms ever improve? We’re here to help patients navigate these uncertainties.
The Autoimmune Association provides essential educational resources, including a question prompt list to guide conversations with doctors, self-advocacy tools to help patients be heard, and a clinical trials guide for those exploring treatment options. We also host an online community where individuals can connect, share experiences, and support one another. Our goal is to equip patients with the tools, knowledge, and confidence to navigate their health journey.
Research
The need for research cannot be overstated. Currently, there is no cure for autoimmune diseases, and many treatments focus only on managing symptoms rather than addressing root causes. Research is essential for understanding the underlying mechanisms of these diseases, developing better therapies, and ultimately finding cures. By fostering partnerships and promoting critical research, the Autoimmune Association is paving the way for a future with more effective treatments and earlier detection.
Autoimmune Awareness Month: How You Can Help
Every March, we observe Autoimmune Awareness Month to shine a light on these diseases, their impact, and the need for better resources and research. With incidence rates on the rise, it’s more important than ever to raise awareness and drive progress.
Each of us has the power to make a difference! Here are a few ways to get involved:
- Engage with the Autoimmune Association on social media.
- Share educational content from our toolkit with your network.
- Secure a proclamation in your local community.
- Create a fundraiser to support autoimmune research and advocacy.
- Tell your personal story to help others feel less alone.
- Contact your legislators to push for better policies and funding.
Visit our Autoimmune Awareness Month page to learn more about how you can take action—not just in March, but all year long. Together, we can create meaningful change and work toward a future where autoimmune diseases are better understood, diagnosed earlier, and have treatments. autoimmune.org/autoimmune-awareness-month
Blog written by the Autoimmune Association and all content and opinions are those of the contributor.
Material is intended for educational purposes and does not constitute diagnosis or treatment recommendations. Please speak with a healthcare professional for all medical questions.