A Message from Mary Fete, M.S.N., R.N., C.C.M., NFED Executive Director
In 1972, in a small town in Minnesota, a young boy was born. Like every kid, he wanted to be accepted, liked, and just be one of the guys.
Very early on, it became clear that this young man’s skin was exceptionally dry and peeling, that his hair was thin and eventually would become nearly non-existent, and that his teeth were few and far between and terribly misshapen. At five years old, Karl Nelsen was diagnosed with an unknown form of ectodermal dysplasia.
For years, Karl did whatever he could to feel “normal” and go “unnoticed.” This included wigs, dentures, daily Vaseline treatments, steroid oils – and constant visits to various doctors and dentists.
As it always does, life moved forward.
Karl married his college sweetheart, Nancy, in 1999. He became a physician assistant specializing in radiology. Over the next 15 years, they lovingly welcomed three beautiful children into the world!
But 10 years ago, when their youngest daughter, Sammi, began showing symptoms reminiscent of Karl’s at that same age, life would quickly move into another phase. He decided he needed to do something – immediately!
Karl joined the National Foundation for Ectodermal Dysplasias (NFED). He began to speak out. He started volunteering and fundraising – and he began fighting for positive change for all those with ectodermal dysplasia.
Some things in life are destined to turn full circle.
Nearly 50 years after he was born, the NFED welcomed this young man as our new 2020 board president, Karl Nelsen.
I have enjoyed watching Karl become an amazing NFED family member, a dedicated board member, a loving and teaching parent, and a joyous leader!
Thank you, Karl, for your gifts to the NFED and for helping every family, every parent, and every child with ectodermal dysplasia. During this incredibly challenging year, you have brought us laughter, compassion, love, commitment, and most importantly, hope.
It is with great pleasure that I share Karl Nelsen’s thoughts on 2020.
A Message from Karl Nelsen, NFED Board President
My struggles are much the same as many NFED families across the nation. People affected by this rare condition must organize, they must network, they must advocate, and they must drive research. The alternative is to be forgotten and to allow our issues to linger for generations.
My goal is to work with every family to help the NFED push forward to convert our hopes into realities!
Thank you for all you’ve done to make 2020 a truly breakthrough year for ectodermal dysplasias. Let me try and summarize some of the year’s NFED achievements – and how they offer a brighter future for you, for me, and for our families.
The HOPE of Research
Over the last decade, the NFED has played a critical role in developing an impactful treatment for those affected by x-linked hypohidrotic ectodermal dysplasia (XLHED). This glimmer of hope several years ago is ACTUALLY now a real treatment. I get goosebumps thinking about the treatment.
A missing protein is replaced early in utero during the baby’s development with two injections within the uterus during the pregnancy. Poof! All the children who have been treated so far have been born with the ability to sweat normally. In addition, they need fewer doctor appointments for upper respiratory infections. It is unclear how much it affects the teeth, but there may be a slight improvement there also.
AMAZING AND LIFE CHANGING.
The NFED has been working with an organization in Switzerland called EspeRare to shepherd this treatment to market. In 2020, the United States Food and Drug Administration (FDA) granted ER-004 “Breakthrough Therapy Designation,” allowing the treatment to be fast-tracked during development in the USA. This is a major milestone.
In addition, the NFED has been working with the principal researcher, Dr. Holm Schneider in support of his efforts to offer compassionate care.
We need more cures.
The NFED is coordinating an October 2021 international research symposium to help catalyze additional impactful treatments for people affected by ectodermal dysplasias. We are bringing together some of the best scientists from around the world to brainstorm how to apply the latest scientific advances to our community.
Dr. Maranke Koster in North Carolina continues to work in her lab to find treatments for people affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome and ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. Dr. Richard A. Lewis in Texas is helping families (like mine!) discover the genetic cause of their unknown variation of ectodermal dysplasia.
The HOPE of Community
For me, one of the most rewarding aspects of working with the NFED has been the community I’ve discovered. My family loves meeting families from across the nation, watching the kids play together, seeing parents learning, sharing, and just having fun.
Our NFED family is growing! Last year, our registry of new individuals and families grew larger than ever before. In 2020, we welcomed incontinentia pigmenti (IP) families into the fold and created an incredible synergy between the two groups.
It has been a strange year, to say the least, but the NFED has been creative and determined to overcome each new obstacle. We went virtual this summer with our first ever online Kays’ Kids Camp. Thank you, programming team!
Kelley Atchison and Audrey Vora were instrumental in making this camp a success. We can’t wait for our next in-person family conference. We look forward to sharing the latest breakthroughs, helping parents make new friends, and watching kids reunite with their lifelong buddies!
The HOPE of Advocacy
Wow! 2020 was a fantastic year for the Ensuring Lasting Smiles Act (ELSA).
We hit the road running with the 116th Congress. In January 2020, Kevin Koser presented our case in front of the Energy and Commerce Committee. It was a smashing success! Shortly after, we were reviewed by the Education and Labor Committee.
We created significant momentum and built essential relationships within our ELSA coalition. In total, we garnered support from 313 members of the U.S. House of Representatives and 53 members of the U.S. Senate. Unbelievable for such a small organization!
The NFED’s Family-Driven Advocacy Committee, led by Becky Abbott and Kevin Koser, has done an amazing job guiding our families through the process in 2020. The first-ever Virtual Day on the Hill was fantastic and may become the way of the future! We are hopeful that once the political turmoil settles down, we will make ELSA, and what it promises for all with congenital anomalies, a REALITY!
Special thanks go to Senator Tammy Baldwin, Senate author of ELSA, and Kevin Koser, NFED parent. They were awarded a Rare Voice Award for their unwavering energy to push ELSA forward.
The HOPE of Teamwork
There’s no need to say that this last year was challenging, with new information coming out every day, seemingly every hour. My head was spinning in March, as I’m sure everyone’s was.
In the middle of it all, the NFED hired a new Director of Development. Tim Mickelson will help us strengthen our relationships with our supporters. His first day on the job was the same day the NFED shut down the office, and staff began working from home due to COVID-19. What a testament to his flexibility and adaptability.
“Welcome to the NFED…now go home and work!” Tim has been a great member of the team, and he is excited to meet our families in person as soon as possible.
Lea Richardson immediately welcomed Tim into the NFED development team. And despite our fears, our fundraising efforts kept us strong throughout 2020, thanks to our generous families and supporters. Together, Tim and Lea have formed an amazing development team – their energy is truly contagious. Watch out!
With “strong” encouragement, our family made the brave decision to host our Minnetonka 5K family fundraiser as a virtual event this past September, complete with several costume changes by yours truly. That was, hmmm, what’s the word – different – fun – embarrassing? Let’s go with interesting!
The NFED team continues to work from home, with the occasional visit to the office for old time sake. Jodi and the marketing team have done a great job telling our family’s stories through social media.
Kayla continues to support everything! And she field calls from our new families and helps them find experts in the office or in the field. All of this teamwork is coordinated by our fearless leader, Mary Fete, who leads with compassion, love, knowledge, and respect. She is the glue to the NFED.
Yep, it’s all about HOPE!
OK. I know – I said HOPE like 30 times. You would think I could use a thesaurus or something. But guess what, when my wife and I wake my youngest daughter from her ever-cute slumber, help her get Vaseline on her dry skin, apply steroid oil to her scalp, attempt to reduce her hair loss, and drive her to her next dentist appointment, I think of the NFED TEAM working on our behalf every single day. As well as all the volunteers that provide their precious gift of time hour after hour.
The NFED TEAM brings me HOPE.
Our FAMILIES bring me HOPE.
YOU bring me HOPE.
Thank you! TOGETHER, we are turning our HOPES into REALITIES!