Happy Spring!  Or, at least we hope it arrives soon. What’s going on at the NFED?  Needless to say, we are busy, busy, busy!  I would like to share with you our progress towards our goals and other activities.

Family Conference
2016 family conference logoWe are in full gear preparing for a great Family Conference in St. Louis, July 21-23.  There are lots of new sessions and great activities for the kids.  We hope to “meet you in St. Louis”!

This is a special year as we are celebrating the NFED’s 35th birthday – 35 years as an ectodermal dysplasia community!  That is incredible. What started at Mary Kaye Richter’s farmhouse kitchen table has grown to an incredible strong organization dedicated to the empowering and connecting people touched by ectodermal dysplasia by providing education, support, and research.

You are Invited to Our Birthday Party
We will celebrate on Friday, July 23rd with a dinner gala (aka birthday party!)  This event will be included in the conference registration fee.  Although the event is included in registration fees, our goal is to raise $50,000 through donations and sponsorships to support our mission.  Please join us!  If you work for a company that would sponsor this event at some level, please contact Brittany Campbell (Brittany@nfed.org) in our office.

Our Day on the Hill
On to 2017!  We will be in Washington, D.C. and planning a “Day on the Hill” which is very exciting  We have a strong Advocacy Committee working on the details and preparations.  We will post dates very soon.  Advocating in D.C. and educating legislators will be a great learning experience for all of us and a great opportunity for your children.

Our Strategic Goals
On to our goals.  We are making steady progress.IMG_4969

Goal 1: Increase Our NFED Community
Increase NFED registrations by 10% each year through 2017.

We need to reach more families to provide support and services.  We know there are many people that we have not reached and likely would benefit from being part of the NFED family.


  • We have a new online, registration form that will streamline the process and make it easier to join the NFED.

Goal 2: Engage Our NFED Community
Increase number of quality family engagements by NFED staff and/or trained community members by 20% each year through 2017. 


  • We have active Family Conference, Advocacy and Website Committees who are helping us meet goals in those areas.
  • We have recruited new bloggers to share personal stories and information. We continue to seek writers and editors to help us with communication efforts.

Goal 3: Treatment and Access to Care
Create two geographically dispersed national treatment centers of excellence by the end of 2017.


  • We have a team working on Center requirements, guidelines. Protocol and template and have explored interested centers.
  • We continue our referral process to our current Dental Treatment Centers.

Establish NFED as the catalyst for all research efforts across all types of ectodermal IMG_2536dysplasias.


  • All of the reports from our 2013 Goltz Research Conference will be published this month in the American Journal of Medical Genetics.
  • We have learned about the National Institute of Dental and Craniofacial Research’s interests in ectodermal dysplasias. They have a research protocol for a salivary, dental implant and treatment study and for analyzing data from the Ectodermal Dysplasias International Registry. This is very exciting and we will more information soon to share with you.

Build a modern, fully functional, mobile friendly, responsive baseline version of NFED website by June, 2016 and optimize social media, and online digital content by December, 2016.



  • We are working with a website company to develop a new online home at NFED.org.
  • We have established NFED on Pinterest and are adding new boards continually. Follow our boards now.
  • YouTube – We launched new NFED awareness video. View and share.

Increase funding by 10% each year through 2017, with an ultimate goal of $1M.


  • We welcomed Brittany Campbell our new Manager of Development.
  • We launched A Send a Kid to Camp campaign through CrowdRise. Please check this out as we are trying to raise money to help get our kids to Kays’ Kids Camp.
  • We have established a new monthly giving program called The Smile Makers. Our goal is to have steady income to have the resources needed to meet our mission. Please join our Smile Makers!
  • We are submitting more grants in 2016 to fund projects. If your company has a grant program or a matched giving program, please let us know. We need your help.

Other blog posts you may be interested in reading:

2 comments on “Greetings from the NFED”

  1. 1
    15 Reasons to Attend Family Conference | National Foundation for Ectodermal Dysplasias on March 28, 2016

    […] Greetings from the NFED […]

  2. 2
    My Story: Emotional Resilience and Hope | National Foundation for Ectodermal Dysplasias on April 12, 2016

    […] Greetings from the NFED […]

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