Risa’s nominator said:
“Risa is an incredibly gifted writer, athlete and advocate for acromegaly. She has published an incredible book, “The Road Unpaved”, and also completed a cycling trail from Canada to Mexico. Her book is a poignant, candid and touching personal story of her journey with acromegaly, demonstrating incredible resilience and faith as she navigates the emotional and physical highs and lows of the condition while also embarking on a life changing challenge to cycle from Canada to Mexico. She is a true inspiration and she has shown incredible empathy, compassion and support when I’ve reached out to her. I am so thankful to have found her story and even more thankful that she takes the time to respond when I am in need of support”
This is what Risa told us:
- What’s your story? Why did you start doing what you’re doing, how long have you been doing it?
Following a Pituitary tumor and rare disease diagnosis in November 2018, I discovered that information about Pituitary tumors and pituitary related diseases was lacking. I thought I might bring some attention to it by riding my bike 1,845 miles down the Pacific coast of the US, from Canada to Mexico. Quickly, the medical field and pharmaceutical companies took notice, and I became a voice and a story of hope and inspiration for many. I went on to write my multi-award-winning book that is bringing hope and inspiration to many, and hopefully awareness as well.
- Why you got involved?
I was appalled at the limited information available to those with rare diagnosis. How could I, or anyone else, make adequate and strategic decisions if we don’t have all the information? Looking back, had I had the knowledge I have now, I may have made very different decisions for my treatment. My goal is to help bring attention to Pituitary disorders and diseases, earlier diagnosis, and potentially saving lives. In addition, people from around the world began contacting me wanting to be heard and to share their experiences. I truly love that I can acknowledge others’ journeys while also offering hope and inspiration.
- What would you like to see happen in The Pituitary Foundation for next 30 years?
I would love for the Pituitary to be a part of regular annual medical checkups. I would love the Pituitary to be as common of a topic as is the Thyroid or Diabetes Mellitus is. The Pituitary is the control center of the body after all and it impacts in ways most people don’t even realize. It’s time for the Pituitary to be front and center! The more we understand the Pituitary the more we can combat its malfunctions.