Newberry lights up to observe Rare Disease Day

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

Feb. 20—NEWBERRY — Community Hall will light up in blues, pinks, oranges and greens this February in 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.

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 will be on display starting Friday, February 24 through Tuesday, February 28.

In addition to the lights, people can learn more about rare diseases by participating in a rare disease scavenger hunt. It will start at Genesis Coffee Hub and lead participants to nearly a dozen stops downtown before finishing up at Community Hall. 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. The local Rare Disease Day event is spearheaded by a group of community members 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 Shelley Bowen, director of Family Services and Advocacy for the Barth Syndrome Foundation. "It means so much that our community is once again participating in this important event. I am grateful to the City of Newberry's leadership for continuing to support rare disease awareness."

The Barth Syndrome Foundation is 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 another rare disorder called Turner syndrome.

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. 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 US, visit rarediseaseday.us. Information about rare diseases can be found at NORD's website, rarediseases.org.