Community Hall lights up to observe Rare Disease Day

The Newberry Observer, S.C.
·2 min read

Feb. 26—NEWBERRY — Community Hall (1209 Caldwell Street) will light up in blues, pinks, oranges and greens this February for a rare occasion in Newberry — observance of Rare Disease Day.

Held annually on the rarest day of the calendar — February 28 — Rare Disease Day raises awareness and advocates for persons with rare diseases and for their families. This year, due to the COVID-19 pandemic, Rare Disease Day is being observed virtually all around the world as participants "show their stripes" by lighting up buildings in stripes of light. The colors will be on display in Newberry starting Friday, February 26, and will remain through Sunday, February 28, in the evenings. Newberry residents are encouraged to help spread awareness by stopping by Community Hall to take a selfie in front of the lights and share pictures on social media using the hashtags #RareDiseaseDay and #NewberryCaresAboutRare.

This effort is spearheaded by Newberry resident, Shelley Bowen, a rare disease patient advocate. 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. Barth syndrome is a rare genetic and metabolic disorder affecting 300 people worldwide. For Bowen, advocating for rare diseases — particularly Barth syndrome — is very personal. She lost both of her sons, Evan and Michael, to Barth syndrome and her daughter, Alanna (also a Newberry resident), has a rare disorder called Turner syndrome.

"I am thankful to the City of Newberry leadership and particularly Councilperson Jackie A. Holmes for championing this important event," Bowen said. "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."

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 six to eight years to diagnose a rare disease. Three of 10 children with a rare disease won't live to see their fifth 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 U.S., visit rarediseaseday.us. Information about rare disease can be found at NORD's website, rarediseases.org and more to learn more about Barth Syndrome, please visit www.barthsyndrome.org.