At the National Foundation for Ectodermal Dysplasias (NFED), we have volunteers whose dedication has allowed us to reach incredible heights. Their positions range from board members and liaisons, to social media ambassadors and Family Conference volunteers.

Each volunteer comes to the NFED with something to give, possibly in the form of precious time, a passionate mindset, or a desire to better the future of our ectodermal dysplasias community. Throughout their time with us, they receive something in return that will positively affect their lives.

Donna Garrett-Miller has been a volunteer for the NFED for a little over a year. In March of 2019, her grandson, Noah, was born with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. He inspired Donna to become a volunteer, and this is how her work for the NFED has impacted her life.

Donna-Garrett-Miller is a proud volunteer for the NFED.

Q. Why are you passionate about the NFED?

This is a very special group of hardworking people that have helped many people for so long. They are such positive and lovely people who are always available to help and answer questions. They do everything humanly possible to help people with ectodermal dysplasias.

Q. Why do you think it is important to volunteer for the NFED and those affected by ectodermal dysplasias?

Volunteering for NFED is so worthwhile. You can see the result by looking at the smiles on the faces of the people affected by ectodermal dysplasias. The courage to live life to the fullest everyday in spite of the physical differences is very inspirational for me.

Donna’s grandson, Noah, has AEC syndrome.

My grandson, Noah, is a prime example, but also Noah’s daddy, my son Brian. He’s in the trenches raising him and Noah’s brothers and sisters. Jessica, Noah’s mom, works everyday and helps out at night when she comes home.

I volunteer because they are doing the hard work of raising the kids and the day-to-day things. If they had the time to volunteer, they would. I want to pay it forward, stay up to date, and make a small but significant impact.

I am very passionate about wanting to advocate for those who can’t do it themselves because they are too young or too busy with work and raising their special needs families.

Q. What was the most powerful moment you had while volunteering or advocating? What was challenging?

Visiting the governor of Mississippi and watching him sign the proclamation for February 29 as Rare Disease Day in Mississippi with the National Organization for Rare Disorders (NORD) group. The kids that were watching seemed like any other children although they had rare diseases. They were just being kids. I loved that. 

It was only challenging because it made me think about the silly things I tend to complain about. These kids have life-altering issues and they don’t seem to even think about it.

One thing that would surprise someone to learn about you is…

I’m actually a softie at heart. Some folks would tell you otherwise. I tend to allow my emotions to get the better of me, as well as my mouth. Not always the best combination. I just don’t have time for negativity or gossip; it’s a big turn off.

Q. What would you say to others who are thinking about volunteering for the NFED?

“The smallest act of kindness is worth more than the grandest intention”

– Oscar Wilde

The NFED is always looking for volunteers. We welcome anyone with open arms! Please don’t hesitate to share your talents with us, or your desire to work towards something bigger.

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