Newberry Community Hall is once again lighting up in blues, pinks, and greens in observance of Rare Disease Day. Held annually on the rarest day of the calendar – February 28 (or February 29 during leap years) – Rare Disease Day raises awareness and advocates for persons with rare diseases and their families. Rare Disease Day is being observed all around the world as communities “show their stripes” by lighting up buildings in stripes of light. The lights at Newberry Community Hall are on display starting Friday, February 21 through Sunday, March 2.
Residents are encouraged to help spread awareness by taking a selfie in front of the lights and sharing pictures on social media using the hashtags #RareDiseaseDay and #NewberryCaresAboutRare. Newberry’s Rare Disease Day initiative was started by a mother and daughter whose lives have been impacted by rare diseases.
“Rare diseases affect an estimated 1 in 10 people in the United States. To put it in more local terms, with a population of 38,000, rare disease affects approximately 3,800 people in Newberry County,” said Newberry resident Shelley Bowen. Bowen is the director of family services and advocacy for the Barth Syndrome Foundation, a nonprofit organization dedicated to saving lives through education, advances in therapies and finding a cure for Barth syndrome.
Bowen lost both of her sons, Evan and Michael, to Barth syndrome, an ultra-rare genetic disorder that affects less than 300 people worldwide. Her daughter, Alanna Boozer (also a Newberry resident), has Turner syndrome, another rare disorder. “I am grateful to the City of Newberry’s leadership for continuing to support rare disease awareness and Rare Disease Day,” said Boozer. “It means a great deal for Community Hall to light up for rare disease awareness alongside other major landmarks from around the world, and it also says a lot about our community.”
As part of the Rare Disease Day activities, rare disease advocates from across the country, including Bowen, will be in Washington, D.C. during the final week of February. They will be meeting with lawmakers to educate them about the importance of research and development of therapies for people living with rare diseases.
According to the National Institutes of Health (NIH), a disease is rare if it affects less than 200,000 people in the United States. Over 25 million Americans live with a rare disease—and nearly half of these patients are children. For the more than 7,000 known rare diseases, 95% are still without FDA-approved treatments. It takes an average of 6 – 8 years to diagnose a rare disease. 3 of 10 children with a rare disease won’t live to see their 5th birthday.
Rare Disease Day is marked globally every year to underscore the nature of rare diseases and what patients face. The National Organization for Rare Disorders (NORD®) is the sponsor of Rare Disease Day in the United States. NORD’s “Show Your Stripes” campaign’s core message is to wear stripes on Rare Disease Day to raise awareness and show support for those living with rare diseases.
For more information about Rare Disease Day in the US, visit rarediseaseday.us. Information about rare diseases can be found at NORD’s website, rarediseases.org. For information about Newberry’s “Light Up for Rare,” contact Alanna Boozer at alanna.boozer@barthstrong.org.
