World Rare Disease Day is an annual awareness initiative founded by the European organization EURORDIS and coordinated by the National Organization for Rare Disorders, Taylor’s Tale and other national and patient organizations in the U.S. and worldwide. Since its founding in 2008, it’s resulted in over 1,000 events and a great deal of media coverage.
Taylor’s Tale, the non-profit organization founded in honor of my younger sister, Taylor, held an event to recognize Rare Disease Day on Friday for the second straight year. We asked members of the rare disease community and the public to gather in Charlotte’s Freedom Park for a candlelight vigil to honor the 350 million people fighting a rare disease, their caregivers and the experts working to find life-saving treatments.
Judy Mayer, my friend and fellow soldier in the fight against rare disease, worked around the clock to pull off Charlotte’s official event in recognition of Rare Disease Day while my mom, Sharon King, prepared to join about 150 other rare disease advocates in Washington for a week of sessions and meetings with members of Congress on Capitol Hill.
Two days before our candlelight vigil, Judy wrote to inform my mom and me that when she opened the box from the glow stick company, she found 150 multicolored glow sticks, even though she ordered white glow sticks, and the box was clearly marked “white.” Since we didn’t have enough time to place a new order, Judy wrote the mishap into our script. So as the sun dipped behind the trees on Friday evening, our emcee, Kathi Knier, asked the crowd on the lawn to light their glow sticks, which “shone in many colors to remind us of the more than 7,000 rare diseases and disorders that have been identified to date.” The colorful glow sticks lit our small corner of the city park, symbolizing the millions who, like Taylor, suffer from one of 7,000 rare diseases, many of which have NO approved treatment.
Soft notes from a guitar drifted across the stage, and those glow sticks bobbed on the lawn, like multicolored fireflies on a summer night from another lifetime. And as I sat in my chair across the water from the small crowd that had gathered to honor heroes like my sister and Bryant Graeber, who has MPS1 and whose optimism shines a light on the world brighter than the brightest candle, I thought that those glow sticks looked strangely beautiful in the cold February night.
While the glow sticks danced in the twilight and the music filled my ears, I thanked God for people like my mom, a true champion for the rare disease community, who at that very moment was making her way back from a week in our nation’s capital during which she did what she was born to do: change the world. I thanked God for people like Judy, who, in the 11th hour, did what rare disease advocates do best: she made lemonade out of lemons – or, as I said in my reply to her email about the goofed glow sticks order – she made fruit punch out of berries. And in the war against rare disease, that’s the key. There’s nothing you can do about what’s already in your genes, or in my case, the genes of someone you love. In most cases, once rare disease crashes into your life, you have to stay in the ring and fight it as best you can. But you don’t have to take those punches lying down. You can hit back. And if you land enough punches, and you believe you can win, someday, you will.
Rare disease affects 30 million Americans (or one in 10 people) and 350 million people worldwide. Are you personally affected by rare disease, or do you know someone who is?