A Leap of Faith to Open Ourselves

By Nancy Nelsen, Guest Blogger

We attended the National Foundation for Ectodermal Dysplasias (NFED) Family unnamedConference during the summer of 2015 in Colorado Springs.  Neither of us, my husband, Karl and I, were prepared for the emotions that filled us as we listened to other families’ stories, and told our own. We felt supported, connected and blessed in countless ways.

When we are so fortunate, it is only right to do something to share our blessings, to give back. We left conference having pledged to do a walk sometime in the next year. As time went by, we put it off as lives are busy and schedules are hectic.

By April it was clear, it was too late to plan a walk for May, but my procrastination strengthened my resolve to get a walk on the calendar by September.  As we applied for insurance and permits for parks and started working on our personal narratives, we were asked, “Why are you doing this?”

At first, the answers were easy. We want to raise awareness for NFED and around ectodermal dysplasias. We want to build a strong community around our daughter and other kids like her. As we got closer to the event and the details came into focus the answers became more specific. We don’t want other families to have to worry about how to pay for their child’s dentures, implants, and/or medical procedures.  We don’t want families to feel alone. We don’t want our daughter to feel alone.

Raising money for the NFED will help families, will help us.  What surprised us most is – we weren’t alone. We were amazed and humbled by the outpouring of support and help which was showered on us.  Local friends and businesses offered to help. We posted notices on Facebook, we sent emails, we talked to our neighbors, our relatives and friends spread the word. As we started inviting people to our event, we told our story.  We educated people.

Our dream, in addition to helping people, is to equip our daughter to tell her story.  We want her to be open about her ectodermal dysplasia. It is part of who she is. Right now she is very happy with who she is.  We want her to stay that way.

We want her to be open about her story, so that when she comes across people/kids who are not educated, she can teach them. Her differences won’t be a tool mean kids can use against her, they are just a part of her. Anyone who knows her understands that her differences are not all of her.

Our event was one way to open ourselves to the amazing community around us.  More than 100 people paused in their busy lives on a Sunday morning to support the NFED. Many more supported monetarily, and many actually apologized that they had previous plans and would miss the event.

Karl was very emotional when he thanked our sponsors, participants, friends and volunteers.  Growing up as a child with ectodermal dysplasia who didn’t know anyone like him, he was overwhelmed by the turnout of people standing to support people like him. Families like us. The support was truly staggering.

We hope the money raised will make a difference in others lives, but the event definitely made a difference in our lives. It was a leap of faith to open ourselves and tell our story.  It paid us back tenfold.  Someday, when our daughter has a tough day, we can look back and remind her about all of the people who gave their time and money, who showed up, who support her, who care about her, just as she is.

(Nancy Nelsen is the wife of Karl Nelsen and mother of Abby, Andrew, and Sammi. Karl and Sammi are affected by ectodermal dysplasia. She also hosted the family’s first Don’t Sweat It Fun Walk/Run in Minnetonka, Minn.)

Editor’s Notes:

View pictures of the event which generated over $24,000 and great awareness. If you are interested in volunteering, creating awareness or holding a fundraiser, contact Lea Richardson or Seth Ferris or call 618-566-6871. You can also complete our volunteer application online.

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Family Volunteers Launch NFED @Home Events

Planning  a party or get together is work. Planning one for people you may have never met before can be even more daunting! But not for two of our Family Liaisons who hosted our inaugural NFED @Home events. These are our newly established informal family gatherings that we hope to take place throughout the United States.


Julie Claeys


Janet Johnson

Julie and Craig Claeys in Michigan and Janet and Russell Johnson in Utah hosted @Home events for families affected by ectodermal dysplasias so they could get to know one another. Everyone shared, laughed, ate, drank, played, and had a great time at these two events.  The Claeys invited people to their home and the Johnsons hosted their event at their church and school.


“It was like having family over and you don’t want them to leave!” Julie said.


Jill Radley

NFED Family Liaison Jill Radley has been a pioneer in bringing families together in her area for several years. She has hosted several family gatherings in Ariz. However, they were not called an NFED @Home event at the time.


We thank the Claeys, Johnsons and Radleys for opening their hearts and “homes” to their NFED family. We know from experience that magic happens every time our families get together. But it takes wonderful volunteers like these three to create the opportunity for it to happen. Thank you!



Janet Johnson (left) talks with a family at her @Home event in Utah.



This lively group loved the @Home event in Michigan that Julie Claeys hosted.


Ectodermal Dysplasias Dental Treatment Center Opens in New York

Families in New York now have a National Foundation for Ectodermal Dysplasias (NFED) Dental Treatment Center in their community.  We are excited to announce our new partnership with the New York Center for Orthognathic and Maxillofacial Surgery (NYCOMS) to provide quality dental care and more affordable costs for individuals affected by ectodermal dysplasias.

Helping families affected by ectodermal dysplasias have access to dental care is one of our major goals. We are thrilled to have a Dental Treatment Center in a large city such as NYC which our families in the tri-state area can all easily access.

“We at the New York Center for Orthognathic and Maxillofacial Surgery (NYCOMS) are very delighted and proud to be a part of the NFED,” Stephen A. Sachs, D.M.D said. “We have had many experiences over the years treating children and adults with this condition and welcome the opportunity to formalize our relationship.”

The NYCOMS team includes six oral and maxillofacial surgeons. They have facilities in Manhattan, Nassau County (Lake Success), and Suffolk County (West Islip) and maintain privileges at the major teaching hospitals in the area – Weill/Cornell Medical Center, Lenox Hill Hospital and Long Island Jewish Medical Center, which are both part of the NorthWell system, and at Stony Brook University Hospital.

Challenging patients requiring functional reconstruction of the jaws and teeth are a prime focus at NYCOMS. They specialize in providing complex dental care including dental implants and bone grafting. They work with a group of skilled prosthodontists so that the foundation work that they do can be completed with functional aesthetic appliances (i.e. dentures).

In 2014, Dr. Sachs and his colleagues published a case presentation about a 30-year-old man affected by ectodermal dysplasias they treated at NYCOMS. They discuss the importance of working as a team to provide the best outcomes.

“We would be delighted to consult with ectodermal dysplasia patients and their families,” Dr. Sachs said. “We are excited to have a formal relationship with the NFED and look forward to many years of cooperative efforts.”

NYCOMS joins 17 other universities and private practices in our Dental Treatment Centers network. We do have a process you must follow to be seen at a center.  Learn where the closest center is to you and how to apply.



A Friend Diagnosed My Grandson

By Nancy Jane Johnson

I’d like you to meet Ethan Noble.  He lives in Ellensburg, a small college town in the


Ethan played the viola in the Talent Show at the 2015 Family Conference.

middle of Wash. which has quite distinctive seasons, snow in winter, 100+ degrees for a short time in summer and lots of wind!  Ethan was born in York, Maine and is almost 15. He lives with his mom, Samantha; step-dad, Miguel; sister, Ashley; two cats, two mini dachshunds, two Reeves turtles and maybe someday soon, his own Labrador retriever puppy.

Ethan was born with pneumonia and spent the first week of his life in Maine Medical NICU in Portland, Maine and the second week in the hospital recovering.

From the time he was born and throughout his first year, family and friends noticed other unusual things about him. His teeth were different. He hated being in sunlight, and had no hair. His thyroid levels were abnormal. His tongue was tied. He had other bouts of pneumonia, was diagnosed with asthma and had no nipples.

The doctors were not sure but sent him to see pediatric dentists, endocrinologists and geneticists.  It was his mom, Samantha’s good friend Heidi, who, after researching his symptoms on the internet, said she thought he had a condition called ectodermal dysplasias.  She was right.

Doctors diagnosed him several months later.  He has seen a geneticist but has not had a full genetic diagnosis.  He is symptomatic for hypohidrotic ectodermal dysplasia (HED) but even then he has differences.  He has some sweat glands but half the normal amount. He has hair but it is brittle and breaks off.  Ethan had his first haircut when he was five years old and even then it was pretty much to even it out.

He has some teeth but not a normal amount and they have no enamel.  When he was three years old, he was hospitalized to do root canals and crowns on all of his baby teeth.  Most adults have a hard time with just one crown!  Now that he is a teenager, Ethan has braces and will be getting more crowns and implants to give him teeth he can chew with and a beautiful smile. He is his dentist/orthodontist’s first patient with ectodermal dysplasia.

He is a pretty normal teenager.  If you were at the Family Conference last year, you will remember him as the kid who played the viola.  He has played viola for about seven years.  He played soccer when he was younger, now he runs cross country and plays tennis in school.

He’s in high school and likes it much more than middle school.  He had some challenges while in middle school with bullies and even some of the teachers he had could have been called bullies.  Ethan coped with the bullying by contacting the school counselors, reporting it and mostly dealing with it on his own.  He knows his family is there for him when he needs them.

Ethan, like other people with ectodermal dysplasias, has a lot of medical appointments. He tends to get sick easily so misses a lot of school days.  Sometimes the school has sent him home because a teacher said his coughing was too disruptive to the class even though he had no fever, had seen a doctor and was on medication.  The school has threatened him with filing a truancy report for missing too many school days even though they were all medical or he was sent home by the school! Thankfully, he has supportive parents.

He has never met anyone else with ectodermal dysplasia at any schools he’s attended or anyplace he’s lived.  One of the biggest challenges his parents have had is finding a doctor or a dentist who actually has heard of ectodermal dysplasias.

Until he went to the NFED Family Conference, he had never met anyone else like him.  He had such a great time meeting everyone and getting to know other teenagers.  Ethan’s mom found the NFED online when he was still a baby.  It has been a wonderful treasure of information and resources as he has grown.  Now, after meeting other members at his first Family Conference, Ethan has new and hopefully lifelong friends.

(Nancy Jane Johnson is Ethan’s grandma.)

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Tips for Finding a Doctor or Dentist

figure-16When you have a rare disorder like ectodermal dysplasia, it’s not easy to find a doctor or dentist who has a lot of experience in treating the condition. Some may go their whole career and never see a patient with ectodermal dysplasia. The process can be frustrating and time-consuming for you. Consider working with a care provider who is willing to study and  learn about ectodermal dysplasia because they are interested in you and how to best care for you.

Here are  resources to get you started in finding a partner for your medical and dental care:

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