On February 26th, Salem High School celebrated Rare Disease day with teachers, students, and special guests including School Board members Dan Edwards and Carolyn Rye, and Mayor of Virginia Beach, Robert M. Dyer,.

Around 25-30 million people in America suffer from a rare disease. They affect one in 200,000 people or less and there are approximately 7,000 currently recognized rare diseases.

“I had no idea how many people suffer from rare diseases before this event,” said senior Amari Zimmerman. “I feel like we know about common diseases like diabetes or heart disease, but I’d never heard of Batton’s Disease before. I also didn’t know how few treatments there are for most rare diseases. This assembly really opened my eyes to what’s out there and I feel like I can better empathize with people who suffer from a rare disease.” 

February 29th is recognized as World Rare Disease Day given that it is leap day and the rarest day on the calendar. The zebra is the “mascot” or symbol of rare diseases; therefore, stripes are the “color” of rare disease awareness. According to the National Organization of Rare Disorders’ website, the zebra was chosen because all zebras are unique. No two zebras have the same stripes.

One of the speakers at the event was Marlo Dean. Dean spoke of the importance of spreading awareness regarding rare diseases and building compassion. She herself has a rare disease and her son, current Salem student, Dante Herrera, lives with Batten Disease and Xeroderma Pigmentosum. 

“I try to be proactive for him,” said Dean, “A rare disease not only affects the person with the disease, but the entire community.”

Dean has been an advocate for Dante from the start. The two of them make frequent trips to Capitol Hill to promote funding for research and healthcare and have received support from politicians such as Bernie Sanders and Elaine Lauria.

At the end of the presentation, Mayor Dyer proclaimed February 29th Rare Disease Day in the city of Virginia Beach in honor of Dante Herrera. Mayor Dyer and Principal Leeane Turnbull-Pallette were each presented with a certificate of recognition from Virginia Governor Ralph Northam.

Dean emphasized the importance of recognizing the necessity of further research to find treatments and cures for millions of people who suffer from rare diseases. Dean also encourages everyone to make calls to their local senators and congressmen to try and spread awareness and highlight the importance of legislation and funding for rare diseases. 

“The event really opened my eyes to how many people with rare diseases have to go without effective treatment or support,” said senior Deslynn Spratling. “I think the event was very worth wild and next year we should have more classes attend. It opened my eyes to all the people we see everyday who have rare diseases and the fight they have to go through.”