Suffolk County Legislator Jim Mazzarella recently joined Caitlyn Michiels, founder of the nonprofit Caitlyn’s Vision, alongside colleagues in government, friends, and family, to witness the H. Lee Dennison Building illuminated in green in honor of Rare Disease Day in Suffolk County.
Caitlyn Michiels, a ninth grader at William Floyd High School, is a dedicated advocate for children with visual impairments. Earlier this year, Caitlyn approached Legislator Mazzarella with the idea of officially recognizing the last day of February as Rare Disease Day in Suffolk County – aligning with efforts in municipalities across the country. Thanks to her advocacy, Legislator Mazzarella introduced legislation designating this important day and directing the Suffolk County Department of Public Works to illuminate the county’s executive offices in green – raising awareness for rare diseases.
Caitlyn’s Journey: Advocacy in Action
Caitlyn Michiels’ advocacy began at the age of 8 after being diagnosed with Anterior Bilateral Uveitis, a rare eye disease and the third-leading cause of childhood blindness. Determined to make a difference, she founded Caitlyn’s Vision, launching fundraising campaigns, collecting used eyeglasses, and championing initiatives for children’s eye health.
Caitlyn’s impact has been significant. In 2019, as a third grader, she successfully advocated for August to be designated as Children’s Eye Health and Safety Awareness Month in Suffolk County. Then in 2020, she donated specialized light covers to the William Floyd School District to aid visually-impaired students. In 2024, she advocated for inclusive playgrounds in Suffolk County, ensuring the addition of bright colors and textured edges to assist children with visual impairments and disabilities.
Now, at just 14 years old, Caitlyn has added another achievement to her growing list – successfully advocating for the official recognition of Rare Disease Day in Suffolk County.
“I was once someone with a rare disease who didn’t have support. I never want anyone to feel the way I did,” said Caitlyn. “Lighting the building shows these patients that Suffolk County cares for and supports them. In order to bring awareness to research, we need to keep the conversations going. I am thankful for my partner, Legislator Mazzarella, and all the legislators, for their support.”
“Caitlyn is a true inspiration to young people everywhere,” said Legislator Mazzarella. “She has never let her diagnosis define her. Instead, she has turned her challenges into a mission to help others live better lives. Caitlyn is someone our entire community can be proud of.”
A Global Movement for Rare Diseases
Rare Disease Day is an internationally-recognized initiative dedicated to advancing equity in healthcare, diagnosis, and treatment for individuals living with rare diseases. Since its inception in 2008, the movement has united a global community, amplifying awareness and advocating for improved care. Observed annually on February 28 (or February 29 in leap years – the rarest date of all), the day is symbolized by the zebra, representing the uniqueness of rare diseases.
The green illumination of the H. Lee Dennison Building was chosen specifically to honor Caitlyn’s Vision, whose signature color is green.