GREENSBORO, N.C. — You can always count on firefighters, police officers, deputies, troopers to be there when you need it or at least to add a little backup!
I certainly discovered that firsthand while trying to raise awareness for Rare Disease Day. They showed up and showed out with an amazing show of support. I was amazed by their support and their willingness to raise awareness to show those in our communities facing rare diseases and chronic illnesses that they stand with us and are the backup we need when it matters the most.
Many families of first responders also have spouses and children who battle these very rare diseases. I’m married to a firefighter who has helped me to sound the alarm and shine a light on my very highly personal and painful journey of battling a rare genital skin disease, called Lichen Sclerosus (LS). I broke my 19 years of silence in hopes of saving lives for Rare Disease Day and to continue the message that every day is rare disease day for those battling these diseases.
Rare Disease Day which is held on Feb. 28, is the rarest day of the year. It aims to support 30 million Americans and 300 million globally fighting rare diseases while raising awareness. Its purpose is to shine a light on the 7,000 rare diseases and lack of cures. More than 90% don’t have cures, according to the National Organization of Rare Disorders. That also includes my own rare disease.
As a part of Rare Disease Day, monuments and buildings across the globe including in the U.S. light up in rare disease colors to show support. It’s a social media movement called #LightUpForRare. I reached out to agencies all across the state asking them if they could find a special way to join the movement by turning on their emergency lights while saying, “Light up for Rare!” I also reached out nationwide and I’m proud to report that our state in North Carolina was the first state to take part in this new way of lighting up for rare.
I was shocked and my heart was overjoyed while scrolling through my social media newsfeed. One after another, these agencies not only just showed up for me but the 7 million in our state battling rare diseases.
Check out Greensboro Police Department's video! The K-9 team even got in on the action!
The Pleasant Garden Fire Department lit up for rare for one of their own. Brian Forbis who is a firefighter had a very special message for his son. Logan has a rare disease called Myotubular Myopathy. He's a warrior always ready to battle. I've never seen Logan without a smile on his face.
Some first responders including deputies with the Guilford County Sheriff's Office lit up for rare for one of their own. This deputy had a very special message for his daughter, 10-year-old, Bailey who's fighting a rare disease. Go Bailey and keep up the fight!
Winston-Salem Police Department joined in to help raise awareness! Winston-Salem Police Chief Catrina Thompson was joined by the patrols and a K-9 team!
Summerfield Fire Department really showed out! They for sure have sounded the alarm to raise awareness for rare diseases! Check out that marque!
The Randolph County Sheriff's Office lit up for rare! Thanks for spreading the message to help raise awareness for those living in North Carolina.
This is perhaps one of my very favorites but that's because it features my husband's fire department. Thank you to my husband, Adam who’s a fire captain at Alamance Community Fire Department in Guilford County for always standing by me and helping me overcome the darkest days that I’ve had to battle with LS. You are my rock and I couldn’t imagine doing this without you by my side.
Thank you to all of our first responders for making it a priority to help out on this truly special day.
Thank you also to the National Organization for Rare Disorders for helping me to find my voice in my own fight with LS. Rare Disease Day just means that much more when you’re fighting for a cure and holding onto so much hope.