Newberry to “Light Up for Rare” in honor of Rare Disease Day

NEWBERRY — The City of Newberry will “Light Up for Rare” in honor of Rare Disease Day from Friday, February 23 – Monday, March 4. Rare Disease Day occurs on February 29.

The city will light up its Historic Community Hall in pink, blue, green and purple – the colors of Rare Disease Day - starting Tuesday, February 22 through Tuesday, March 2. The effort is being spearheaded by Newberry resident and rare disease patient advocate, Shelley Bowen. Last year, downtown Newberry was highlighted Newberry Community Hall alongside the FDA, the Empire State Building and other well-known around the world which were also aglow in rare disease colors.

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 for championing this important event,” said Bowen. “Rare diseases affect an estimated one 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 residents.”

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.

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.

Rare Disease Day is marked globally every year on the last day of February — the rarest date on the calendar — 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., go to www.rarediseaseday.us. To search for information about rare diseases, visit NORD’s website, www.rarediseases.org. To learn more about Barth Syndrome, visit www.barthsyndrome.org.