Thank you so much to the entire Newberry community for showing its support for “Light Up For Rare” and Rare Disease Week! Newberry has a small but mighty local rare disease network. We are so proud of our little community participating in this global movement to raise awareness of rare diseases and promote advancements in treatments. It was incredible to see Newberry Community Hall lit up in pinks, blues, purples and greens, the colors of Rare Disease Week!

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 Week 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 Week in the United States. NORD’s “Show Your Stripes” campaign’s core message is to wear stripes on Rare Disease Day – held annually on February 28 (February 29 during leap years) – to raise awareness and show support for those living with rare diseases.

The level of community support for “Light Up For Rare” and Rare Disease Week was phenomenal. Special thanks to the City of Newberry for agreeing to light up Community Hall and for demonstrating a commitment to support Rare Disease Week; WKDK for sharing stories of local rare disease advocates and helping promote “Light Up For Rare” and Rare Disease Week; and to all of the businesses in downtown Newberry that displayed the “Light Up For Rare” flyers in your shop windows for all to see!

Finally, thank you to everyone who stopped by Community Hall to take selfies and share them on social media. We appreciate you showing your support and being a part of the larger Rare Disease Week conversation!

We look forward to next year’s Rare Disease Week and seeing Newberry once again “Light Up For Rare!”

Sincerely,

Shelley Bowen, Michelle Williams, Chelsea Lake, Kristin Keim, and Alanna Boozer