Sharing Our Rare: Sue Colon

Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how they've received a Rare Disease Day Proclamation from their local city officials.

Sue Colon, mom to Shealynn (3) living with PWS, is one of these parents who received a Rare Disease Day Proclamation in the Township of Monroe, New Jersey. Below, Sue shares the steps she took to get the Proclamation and what motives her to share her rare!


What motivated you to reach out to your local government/officials?

My motivation for reaching out to my local officials was to raise awareness and bring attention to PWS and all rare diseases that affect so many of  our children and families. 

Why do you encourage others to do the same and what is the best first step you recommend they do?

I encourage others to do the same because people do want to help, but we can’t receive help without asking and discussing the challenges and needs of our rare community. Raising awareness is essential to PWS and other rare diseases. Awareness can open doors to much needed resources like funding, research, and development of treatments. 

As a first step, I created a letter introducing myself, my loved one affected with a rare disease (PWS), and the symptoms and challenges our community faces. I kindly requested their help in raising awareness by illuminating in Rare Disease colors on February 28th, giving a Proclamation or, spotlighting PWS in local newspaper coverage. I also followed up with a call and email. 

How did you receive the proclamation and what was that experience like?

Our local mayors office contacted us almost right away and offered their full support. We had a meeting with Mayor Dalina and discussed PWS symptoms, the challenges, and our need for awareness. It was a very empowering experience to be the voice for my daughter and so many other individuals living with PWS and any other rare disease.

What inspires you to advocate for PWS?

My inspiration is my daughter Shealynn. I have watched her overcome so many struggles and obstacles due to PWS. I decided to help her fight back through advocacy. I like to call it "making noise." She is a courageous little girl and she, along with our other PWS friends, deserve an opportunity to live longer, fuller, independent lives. 

You can see a photo copy of the Proclamation Sue received below. We also encourage you to learn more about Rare Disease Day and how you can get involved by clicking here!

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