National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

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The NFED is Moving Its Headquarters

We Are Moving
For 30 years, the National Foundation for Ectodermal Dysplasias has called Mascoutah, Illinois “home.”  The international charity is moving its office to Fairview Heights, Illinois on Saturday, December 1st to be more centrally located.

“It’s very bittersweet to be leaving,” Judy Woodruff, NFED Executive Director said.  “From day one when Mary K. Richter founded the NFED, the Mascoutah community has embraced our mission and supported us. They have helped us develop into the organization we are today.”

Richter started the NFED in 1981 in her husband, Norm’s office at their home in Summerfield. Reverend Charles Sheffield, pastor at St. John United Church of Christ at the time, offered the Foundation an unused storage room off the balcony.   

“During funerals, they would have to take the phones off the hook so the ringing wouldn’t interrupt the service!” said Woodruff.

As the Foundation staff increased to three, the NFED moved to 219 E. Main in the late 1980s and shared office space with Harter and Larson Law Firm. By 1998, the growing Foundation needed more space and moved to its present headquarters at 410 E. Main. 

According to Woodruff, the NFED Board of Directors has contemplated a move to be closer to St. Louis for a few years.

“Under Mary Kaye’s leadership, the NFED developed from a mom on a mission to an international organization now serving 6,500 families around the world,” Woodruff said.  “The Board’s vision for NFED’s future is to transition from a local organization with national reach to a national organization with increased international reach.  To make this move and for the Foundation to grow, we are strategically moving to Fairview Heights, which is a central location, equidistant from our Mascoutah roots, our dental treatment center in Edwardsville, and resources in St. Louis. It has easy access to major highways and the St. Louis airport. This move is the next step in the NFED’s evolution.”

Fairview’s location also enables the NFED to connect with the St. Louis metro area for fundraising and volunteers. As the Foundation staff grows in the future, a more central location will also bring more candidates for positions.

Woodruff said, “Right now, we are relying more on interns to accomplish our mission. We have had much success with interns from McKendree University, but with only 2,000 or so students, we have not been able to attract up to three interns per semester. With more than 14,000 students at SIUE, we will be able to attract more interns at our new location, and be more accessible to them.”


PLEASE NOTE:  The NFED will NOT have phone or email service from Friday, November 30th through Sunday, December 2nd while the office moves to its new location. The office will reopen on Monday, December 3rd.

The NFED’s phone number (618-566-2020) and email addresses will all remain the same. The new address is 6 Executive Drive, Ste. 2, Fairview Heights, IL  62208. 


Here are photos from the archives of the NFED offices through the years:

The first formal office was in a storage closet off of the balcony at St. John United Church of Christ in Mascoutah. 1982 - 1989 The door in the far left was the door to the NFED office. This is the entire office in the church balcony. The next office was at 219 E. Main in Mascoutah. We shared space with Harter and Larson Law Firm. 1989 - 1998 Beverly Meier sits in her office at 219. E. Main. The office at 410 E. Main St., Mascoutah  - 1998-2012 The staff in the foyer at 410 E. Main in 2009.

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The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360