It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here.
Patient Advocate | Stroke/Moyamoya Disease
- North Attleboro, MA
- Contact info: Email | Twitter | Facebook | Linked-In
- Moyamoya Disease affects 1-9 of 1,000,000 people worldwide
- Passionate about: Legislative Policy, Patient Support, General Community Awareness
Why did you become an advocate for your rare disease community? What was happening in that community that made you want to take action?
After suffering three strokes and overcoming rehabilitation in my early twenties, I was a passionate advocate and volunteer for heart and stroke. At age 39, I suffered my fourth stroke and was diagnosed with a new rare brain disease, Moyamoya. As I prepared for two brain bypass surgeries, I met an active, supportive and caring group of patients and caregivers online. These friends supported me emotionally as I underwent the biggest challenge of my life.
As I recovered after my surgeries, I recognized that I could use my experience and voice as a source of hope and help for the Moyamoya community. There isn’t a Moyamoya non-profit organization yet but there are many passionate individuals. I’ve also formed a non-profit organization with two other moms which focuses on heart disease, stroke and Moyamoya disease.
What was your first success or defining moment as a rare disease advocate?
For years I have lobbied at the local, state and National level for heart and stroke. My defining moment as a rare disease advocate was my very first rare advocacy event. It was a new experience testifying at the Massachusetts State House about the terrifying diagnosis of a rare disease and the challenging brain surgeries that saved my life. I knew I was meant to help other Moyamoya patients!
Share some of your biggest accomplishments as a rare advocate?
Through my social media channels and my blog, I have raised awareness of Moyamoya disease. I’m proud that I have lobbied at the State and National level for rare disease as well as hosted local events. Being published by the Huffington Post was pretty cool too. I am just starting as a rare advocate so can’t wait for more big accomplishments!
Share some of the hard realities you faced advocating for your rare disease.
know my voice is needed as none of my state or Federal legislators have ever heard of Moyamoya disease. Everyone knows about heart and stroke- my usual topics of discussion. It’s an uphill battle to educate about rare disease while asking for help. Fundraising and trying to do it all is also difficult.
What project(s) are you working on now for your community?
I’m learning all I can to help my Moymoya Community. Locally, we are attending Moyamoya events and lobbying at the local level. Through my social media channels, I am raising awareness and educating others about Moyamoya disease. I am also working on a book about my personal story and overcoming adversity.
What advice would you give to an advocate just starting out?
Recognize that your personal story is unique and important. Don’t ever think that you can’t make a difference. Be open to opportunities. In the rare space, be open to meeting others as we can do more together. Just keep going!
Why do you find working with advocates from different disease groups beneficial?
I love that the rare disease world is extremely collaborative, open and supportive. Working with other groups consistently educates and inspires me. Many rare patients benefit from the same policies, legislation and research so it makes sense to work together. I’m thankful to all the rock star advocates who have provided guidance to me!