It is hard to believe we are just a few weeks away from starting a new year. Whew! The time certainly flies.

When I look over 2015, I think of all of the wonderful things that occurred in this year and I am thankful for all of our blessings.   You helped us accomplish all of these things and we are truly grateful that each of you are a part of our family.

  • We established a new brand and new look.
  • 206 new families joined our NFED family this year.
  • 300 individuals attended a wonderful Family Conference in Colorado Springs.
  • 28 families helped the NFED with a fundraiser to raise much needed funds so we can fulfill our mission to provide programs and support for families, and to support research and treatment.
  • 885 financial gifts were made by families to help us stay strong now and for generations to come.
  • We supported two research projects in hopes of eventually finding cures.
  • Nine individuals were awarded funds to help with much needed dental treatment.
  • We sponsored the second Goltz research conference.
  • 160 volunteers donated 2,000 hours to the NFED.DeeDee and Jade & Friends

We have a busy year planned for 2016.  The NFED, with the help of our Board of Directors, families and advisory councils, have identified six main goals for the next three years.  The NFED staff will focus on these key areas:

  • We want to grow our NFED family by increasing our registrations by 5% in 2016 and 10% in 2017 and 2018. We want to be sure that we reach all individuals who are affected by ectodermal dysplasias and welcome them to our family.
  • It is important for us to engage our community and increase our family participation and volunteerism by 20% each year through 2018. We depend on our family and community to be the backbone of the organization.  It is your organization!
  • Access to medical care and dental treatment is the number one call that we receive at the NFED office. We plan to create two geographically dispersed national treatment centers of excellence by the end of 2018. These centers will be multi-disciplinary centers where there are experts at the centers willing to consult with care providers across the country.  We know this is a critical issue for you.
  • We want to continue to grow our research program and establish the NFED as the world’s leader in ectodermal dysplasias research and be a catalyst for all research efforts across all types of ectodermal dysplasias. Our ultimate goal is to find treatments and ultimately cures for all ectodermal dysplasias.
  • We plan to build a modern, fully functional mobile friendly responsive baseline version of NFED website, social media, and online digital content by May, 2016. We are so excited to roll out this new website with fresh and up-to-date content.  We will not be mailing our magazine, The Educator, in 2016 so that we can focus on making this website the absolute best it can be.  All of our content will be electronic in 2016.  Instead of The Educator, we will send monthly eNewsletters and will be posting family stories and updates through our blog.   If you are not receiving our emails but would like to so you can be up-to-date on our news, email us at with your information.  We are trying to maximize our resources both in terms of time and money.
  • We have hired a Manager of Development and plan to increase funding by 10% each year through 2017, with an ultimate goal of raising $1 million. We are working on a strategic development plan and timeline for 2016 that will grow our revenue at least 10%.  This will enable us to offer more programs and support for our families and grow our research and treatment programs. We need to be sure we are strong for generations to come!

We hope we can count on you to help us reach our goals.  You will be hearing from us about ways that you can participate. Please join our efforts!  I will send quarterly progress reports to you.

As we end 2015, we look forward to 2016 and accomplishing our goals together.

We wish you a wonderful holiday season full of lots of love, laughter and good times with family and friends and a healthy, prosperous and happy 2016.

Much love to you and your family!

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