By Janet Johnson

Family Liaison for Nevada & Utah and more!

Janet and Alex Johnson
Janet with her son, Alex

I have been known to some colleagues to be a pointer, not a painter. This short blog is an attempt to answer the question “Why I volunteer for the NFED?”  I truly believe the answer to that question is, “Why not?”

My name is Janet Johnson, and I reside in Salt Lake City, Utah while being wife to Russell, and mom to Taylor and Alex.  Alex was born in July 1996.  In the spring of 1997, we found the National Foundation for Ectodermal Dysplasias after Alex was officially diagnosed with this genetic condition, even though it was mentioned to us during his first week of life, probably putting me into a denial stage.

Now, we are almost at 20 years of Alex impacting our lives with love and laughter along with 19 years of the NFED being a strong supporter in our lives and becoming part of our family.  What a great journey…and it continues!

The NFED has an unwavering, unconditional, and unfathomable commitment to people living with ectodermal dysplasias!  Why would I not want to get involved and be a part of this fabulous organization?

It is a privilege to help such a dedicated staff that is passionate about their work.  And it is an honor to be part of the many volunteers that have such dedicated hearts and passion for their own family and for their NFED family.  I have learned that being a volunteer is rewarding. It makes my heart feel good.

The NFED logo has a phrase that says:  Supporting you.  Supporting each other.  So, “Why not?”

I enjoy being a liaison, doing small or easy fundraisers, and volunteering a little time at the Family Conferences when we get the opportunity to attend.  If I can help just one by listening, or sharing our experience, or providing a few dollars toward someone’s dentures, or helping a brand new family find the session they are looking for – then I have served – just like others have serviced me and my Alex.

The foundation states its mission is to empower and connect people touched by ectodermal dysplasias through education, support and research.  Alex, Taylor, Russell and I get to be a part of that community…and it continues!

Dedicated hearts are not always easy to find in this fast paced, busy world we all live in.  It takes a special person to be generous and kind to give of their time and talents. But, I am sure that if you ask any volunteer of the NFED why they do it, they would reply that the NFED has given them so much, and that they just want to give back or pay it forward.

Families and individuals affected by ectodermal dysplasias face many challenges.  These people and the NFED have goals they want to accomplish or achieve.  Volunteers do make a difference.

Individually and collectively, volunteers are powerful.  Be inspired.  Step up.  Make your mark.  Find something you can say yes to and get engaged.  No matter how big or how small – every volunteer thing that can be done is appreciated. And, it’s fun. Then,  your heart will want to do more…so, “Why not?”

Janet lives in Salt Lake City, Utah with her husband, Russell, and their two sons, Taylor and Alex. Alex was almost one year old when he was officially diagnosed with hypohidrotic ectodermal dysplasia.

Janet says, “The NFED can empower doctors who have never cared for a child with ectodermal dysplasias. It also helped me educate and inform our school and teachers about Alex. You also get a support group that can be of great help and comfort to you.” She looks forward to hearing from families in her region.

You may also be interested in:

Share Your Story

One comment on “Why Not?”

  1. 1
    Faith Mamoeti Sandlane on June 22, 2016

    Im South African mother with a 18 tears daughter living with EEC Syndrome,
    Kindly advice on how i can start create a NFED in our country.
    Kind regards

Leave a Reply

Your email address will not be published. Required fields are marked *