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Calling for backup: Firefighters, police officers, deputies, troopers show up across the Triad to raise awareness for rare diseases

I was amazed by their willingness to raise awareness for rare diseases and to show they are the backup we need when it matters the most.

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! 

It's National Rare Disease Day! Did you know that there are 1 in 7 million in North Carolina living with a rare disease and 1 in 30 million nationwide? There are about 7,000 rare diseases and 95% of them don’t have cures. Plus, pediatric cancers are considered rare! GPD is proud to Light Up for Rare and bring awareness to rare diseases. For more information please visit www.rarediseases.org #LightUpforRare

Posted by Greensboro Police Department on Monday, February 28, 2022

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! 

Rare Disease Awareness Day

The Winston-Salem Police Department stands with the Rare Disease Community and other families battling rare diseases on Rare Disease Day. Today we #LightUpForRare National Organization for Rare Disorders, Inc. (NORD) #RareDiseaseDay #RareDisease #NORD

Posted by Winston-Salem Police Department on Monday, February 28, 2022

Summerfield Fire Department really showed out! They for sure have sounded the alarm to raise awareness for rare diseases! Check out that marque! 

We Light up for Rare! Summerfield Fire stands with the Rare Disease Community and other families battling rare diseases on Rare Disease Day. Did you know? *7 million in NC live with rare diseases, 30 million nationwide, 300 million globally *There are more than 7,000 rare disease and more than 90% do not have cures *All pediatric cancers are considered rare diseases #LightUpForRare #RareDiseaseDay #RareDisease #nord National Organization for Rare Disorders, Inc. (NORD) WFMY News 2 Carrie Scott Hodgin

Posted by Summerfield Fire District on Monday, February 28, 2022

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.

“Light Up For Rare,” as we stand with the Rare Disease Community and other families battling rare diseases on Rare Disease Day. #LightUpForRare #RareDiseaseDay #RareDisease @NORD Rarediseases

Posted by Randolph County Sheriff's Office, NC on Monday, February 28, 2022

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.

We stand by the rare disease community and other firefighters and their families battling rare diseases. This is how we “Light Up for Rare” on this special day. Keep fighting! 🚒🎗💪 #LightUpForRare #RareDiseaseDay #RareDisease #rarediseaseday2022 National Organization for Rare Disorders, Inc. (NORD)

Posted by Alamance Fire Department on Monday, February 28, 2022
Credit: WFMY News 2
Adam Hodgin is a fire captain with Alamance Community Fire Department in Guilford County

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.

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