What's your advocacy expertise?
In your advocacy journey, everyone finds their "niche." Some people are amazing at making TikTok content, others find themselves giving keynote speeches, and many find themselves hosting support groups online. What would you consider your expertise?
Hi all! I was born with a genetic disorder called Turner syndrome. I wasn’t diagnosed until I was around 13 years old. When I was diagnosed, I had no idea what Turner syndrome is, and it turns out I’m just one of many who didn’t know about Turner syndrome. It’s a condition that can cause a lot of complications, and can lead to disability. However, since Turner syndrome is not well known, it can be sometimes be hard for people to understand why someone with Turner syndrome might need disability accommodations. There have been times when I have struggled to get accommodations, and have even been denied. I had to appeal accommodation decisions. For this reason, I started a blog focused on my experience with Turner syndrome. I love to write, and I’ve been told I’m a good writer. I decided to use my writing skills to spread awareness.
I also write a lot about living with mental illness. I have had depression since childhood. I didn’t reach out for help until adulthood because of the stigma on mental illnesses. I want to help fight that stigma.So amazing! What's your blog? oh wow! Thankyou for asking! If you checkout my blog I hope you like it! Here’s the link! http://lifewithcharli.home.blog/
Over 40 years living with MS means I’ve learned a thing or two about it. I share my knowledge in my blog, The MS Wire, and my book, The Multiple Sclerosis Toolbox. I’ve also consulted with the creators of some MS apps and provided a patient’s viewpoint to a pharmaceutical company on better communications with us.
My advocacy expertise centers around the lived experience of navigating Sickle Cell Disease while building bridges between patients, caregivers, clinicians, researchers, and the broader public. I approach advocacy through education, storytelling, mental health awareness, and equity-focused community engagement.
At the core of my work is the understanding that advocacy is not just about awareness. It is about changing systems, creating access, encouraging empathy, and making sure people feel heard, believed, and valued.I am and have been a COPD Advocate. On my own, in the past, I have been an advocate for Obesity, Allergies which is something that I have personally struggled with. My Asthma has become severe and I am learning more about it.
