Meet Margaret Robb

What is your relationship to HPP? 

I am the Communications Manager and Patient/Caregiver Navigator. I create content for our social media platforms (Instagram, Facebook, and Twitter), run the website, and publish our quarterly newsletter. In addition, I support our patients and caregivers by connecting them to resources and programs. 

How long have you been involved with Soft Bones?

I joined the team in November of 2023. 

What do you want the world to know about HPP?

Through talking with patients and navigating our Soft Bones resources, I have learned that HPP has a diverse spectrum of severity, making it difficult to diagnose, let alone treat all aspects of the disease. I am hopeful that future research can address the needs of our patients and create a more informed world. Through education and advocacy, we can bring light to this disease and strive for better care and patient satisfaction. 

What motivates you to be a part of this community? 

I am grateful to be a part of this community. A community that is strong, resilient, and hopeful. My first National Patient Meeting made me realize the impact that our work has on our patients, caregivers, and families. I came into this role wanting to support our patients and to amplify their voices. Little did I know our patients already do that. They support one another through various social media platforms, they go out of their way to connect with HPP members near and far, and they are always ready to tell their story and listen. I’ve had the privilege of connecting with patients online and in-person. Every journey is different, but fraught with similar challenges, triumphs, and life lessons. I love getting to learn from long time community members and welcoming new ones. Through written words, I get to magnify the impact our HPP community has on one another and within their local communities. 

What is your favorite quote? 

“I can be changed by what happens to me. But I refuse to be reduced by it” – Maya Angelou

What is one fun fact about yourself? 

During Covid, I worked on an organic farm in Indiana called White Violet Center for 3 months. I learned all about organic farming, as well as how to take care of chickens and alpacas! Did you know that alpacas are gentle grazers? This means they are eco-friendly animals that help control overgrowth, prevent soil erosion, and enhance pasture quality. On hot days, they love to cool down with a garden hose. The also spit, so watch out!