Debbie Reed has celebrated Ectodermal Dysplasias Awareness Month the last few years by hosting a fundraiser. She also posts on her Facebook page every day in February, sharing National Foundation for Ectodermal Dypslasias (NFED) posts and information about ectodermal dysplasias and her family. We had a few questions for her about why she does it.
Q. Why are you passionate about the NFED?
True passion comes from the heart. As Randi’s mom and Weston, Finley, Hattie, and Chloe’s grandma, I will never be able to repay the people that started and continue to help families all across the country who are affected by ectodermal dysplasias.
My passion to bring awareness to everyone that being rare, different, is just what God is trying to teach us, He doesn’t make mistakes. I encourage others to make a difference and hold a small fundraiser and/or become a social media ambassador, not just during Ectodermal Dysplasias Awareness Month but throughout the year.
Q. What are you most excited about when you volunteer during Ectodermal Dysplasias Awareness Month?
I believe that the most exciting part of posting daily during Awareness Month is, the people that follow me, the likes, the comments, and the ones that feel the same passion to share my post. I believe I am creating awareness and a small impact.
Q. What was the most powerful moment you had while volunteering during Ectodermal Dysplasias Awareness Month? What was challenging?
I truly don’t feel like I’m volunteering during Ectodermal Dysplasias Awareness Month. I am just being a mom and a grandma and there are many people who feel the same way about their kids and grands. I spread awareness so others get educated about this rare disorder. I Rise Up for Rare.
The challenges: Life will always give us a challenge, but it’s up to us to grab it and run with it. I will always make time for my kids and grands and do the best I can for each of them. It’s challenging to post each day but I gladly do it to educate others about ectodermal dysplasias and sharing my family’s story and updates.
Debbie lives in Texas with her husband, Bob. You can read more about her story, A Grandmother’s Take on Ectodermal Dysplasia.Volunteer