By Jenny Steele

Steele, Allison
Allison Steele

Three years ago, we heard the term ectodermal dysplasia for the first time.  An internet search introduced us to the NFED.  With a few clicks of the mouse, we found a wealth of information and a community of people who understood what we were facing.  The NFED family would become a lighthouse to help us guide our lifeboat.

We were humbled to have strangers willing to take our phone calls, exchange emails, introduce us to others through social media, and demonstrate patience with encouragement as we processed Allison’s clinical diagnosis.  Had it not been for the NFED, we wouldn’t have this amazing support network to connect with.  Many of you reading this have blessed our family, for that we are grateful.

The NFED staff is tremendous.  One of the first things that we experienced was the hearts of these tremendous people. They also provided us tried-and–true information to help us navigate through all that would unfold in days ahead. From preparing for 504 meetings at school to asking the right questions at medical/dental/genetic appointments, it was a great feeling to have this group of professionals on our side.

Shade at the School Playground for Allison! We finally succeeded by being persistent with lots of help.

A group or organization thrives when its members are engaged. As our ectodermal dysplasia knowledge grew from education and experience, we found ourselves naturally in a place where we wanted to help an organization that had blessed us so much.

I found a niche in sharing information with others ranging from cooling, hair care and 504 planning. With my medical background and the passion of a mama bear, I have helped others navigate through school challenges of accommodations to ensure safety while at school and have the same opportunities as their peers.

Kris works for one of the nation’s largest financial companies. One of his volunteer roles is chairman of a corporate board with a goal to help develop a workplace in which people of all abilities can reach their full potential by creating an inclusive environment.

One of his first priorities was to raise awareness and provide education on unseen and lesser known challenges that employees and customers experience. The board hosted a panel discussion on invisible challenges. Allison was one of the panelists educating a group of over 200 professionals.

DTT Picture of the Steele Family
Speaking at the Delta Theta Tau Conference in Iowa.

One of our favorite opportunities to give back was through an event that occurred in our hometown of West Des Moines, Iowa this past summer. Delta Theta Tau Sorority, a longtime supporter of the NFED, asked the NFED to speak at their annual conference.

We were humbled by the opportunity to share our family’s story with this group of amazing women. It was truly an honor to share how the NFED has enriched our lives. Allison was empowered to speak to this large group by foundation staff. She was so proud to be able to volunteer on behalf of the NFED.

We are excited by the many ways people support the NFED. Thank you for all you have done to continue education, support research, but most importantly, thank you for sharing your journey. There are many ways to volunteer, large or small. We look forward to all the ways we can collectively make a difference and make a great organization even better.

Editor’s Note: Jenny Steele is mother to Allison and Bennett.  Allison was clinically diagnosed with HED the summer after kindergarten. She currently is a 4th grader, and loves reading and math. She is loving her new title as “big sister.”

Would you like to volunteer with the NFED? Email Lea Richardson, NFED manager, community engagement, at or call her at 618-566-6871. You can also learn more about volunteering on our website .

You may also like:

Volunteers are Love in Motion!

The NFED Changed the Dialogue About our Son’s Condition

“Ripley’s Believe it or Not” Helped my Family Find the NFED

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One comment on “A Lighthouse to Guide our Lifeboat”

  1. 1
    It’s Time For a Change: Advocating for Children with Rare Diseases | National Foundation for Ectodermal Dysplasias on November 6, 2015

    […] A Lighthouse to Guide our Lifeboat […]

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