NFED: Memories and Tribute

I have many memories of the National Foundation for Ectodermal Dysplasia (NFED).

When I was 8 or so years old my dad received a letter in the mail. The letter was from a mom who was desperately seeking help for her son. Her son had been recently diagnosed with Ectodermal Dysplasia (ED) and she was looking for anyone who would be willing to share information to help her process this new diagnosis.

My Dad answered the call. I am not sure how much experience he had with ED before he met this beautiful mom, but he picked up the phone and called her right away. This phone call led to a beautiful friendship between my dad and Mary Kay, the mom seeking answers and help for her son.

The NFED Was Born

This community was a huge part of my dad’s life. The life of our entire family, in fact. He attended every family conference he could attend, generally carrying dental chairs and other equipment with him. My dad wasn’t a fan of flying so he drove everywhere he could. And the foundation entrusted him with all of the “stuff” for each conference.

I always walked arm in arm, or hand in hand, with my daddy and wore my name tag with great pride. I have to admit, I felt special when we walked around together. And I ALWAYS felt honored to be his daughter.

My precious Daddy had an amazingly huge heart. He gave his phone number to any parent who was struggling with the diagnosis or needed to find a local pediatric dentist with experience with ED. My dad met with parents, gave dental exams, and sat on the floor with kids showing them that the impressions needed to make dentures weren’t scary or painful.

He loved every child and every family and they loved him!!

What are Etodermal Dysplasias?

Ectodermal Dysplasias (ED) are a group of more than 180 disorders that affect the outer layer of tissue of the embryo (ectoderm) that helps make up the skin, sweat glands, hair, teeth, and nails. Symptoms of ED can range from mild to severe and may include teeth abnormalities; brittle, sparse or absent hair; abnormal fingernails; inability to perspire (hypohidrosis); various skin problems; and other symptoms. Different types of EDs are caused by genetic changes in different genes, and can be inherited in a variety of ways. https://rarediseases.info.nih.gov/diseases/6317/ectodermal-dysplasia

When my precious Daddy died, I contacted the NFED almost immediately. I knew that everyone there LOVED my dad. I knew they would mourn with me. The pain would be just as raw for them as it was for me.

Tribute

Then this beautiful tribute appeared on the webpage of the foundation.

April 21, 2020Category: NewsPosted by NFED

In 1981, a farm wife in Southern Illinois wrote letters to dental schools across the United States. She asked them if they had ever treated anyone with ectodermal dysplasia, like her son, Charley. The first to respond was a pediatric dentist from Virginia. He picked up the phone and called her.

He not only had seen six patients, but he offered to help Mary Kaye Richter with her idea to create a group to help families. His name was Frank H. Farrington, D.D.S., M.S. And her idea became the National Foundation for Ectodermal Dysplasias (NFED).

We’re sure that when Dr. Frank made that first phone call to Mary Kaye, he never dreamed it would lead to what he later described as the most important thing he had ever done in his professional life.

It is with incredible sadness that we share that Dr. Farrington passed on April 10 after being ill for a few years.

“Our hearts are heavy knowing that our beloved Dr. Farrington is gone,” NFED Executive Director Mary Fete said.

“Perhaps no other health professional has impacted our NFED family more during his 40 years of service to the Foundation. He got involved before there was even officially an organization. I can’t imagine the NFED without him. He had dedication and heart.”

This week is Volunteer Appreciation Week. It seems incredibly fitting to remember and celebrate one of our ultimate volunteers, Dr. Frank.

IN THE BEGINNING

Dr. Farrington joined the NFED’s Scientific Advisory Council when it first formed in 1982. So little information existed about ectodermal dysplasias and so much research was needed. He and the other SAC members charted a course to help the Foundation find those answers.

Mary Kaye remembers what a good friend Dr. Farrington was to the Foundation, especially during the formative years.

Early in the development of the NFED we needed a Superman to help pave the way. Frank was one of three who provided advice, guidance and counsel. But most of all, he provided loving support and willingness to help whatever the need. There was no assignment too big as Frank was always ready to help. If the NFED has a hero, it’s Frank Farrington.

In those early days, Frank was instrumental in helping write educational articles and our first Dental Guide about how to treat the dental needs of ectodermal dysplasias. He listened to families at Conferences and shared what he’d learn so far in treating patients.

As the Foundation grew, he attended national and international professional meetings on NFED’s behalf, spearheaded a dental research survey and helped develop our first patient questionnaire. Dr. Frank alerted the Foundation when he saw opportunities for the NFED to participate in national oral health conversations as patient advocates. He reviewed research proposals, advised families, educated other dental professionals and advocated for families’ need for insurance benefits.

Even as far back as 1983, Dr. Farrington recognized the challenges NFED families were starting to face getting health insurance companies to cover their dental care. He worked for years with the cleft lip/palate communities to get a regulation passed in Virginia for people affected by congenital anomalies to get benefits. This early advocate made sure ectodermal dysplasias were covered by it.

SUMMERS WITH FRANK

Most families remember Dr. Frank from Family Conferences. He was a fixture at these annual summer events until the last few years when his health prevented him from attending. Until then, he would proudly tell you that he had only missed two since 1982. He kept every Conference t-shirt and wore them as badges of honor at other conferences.

“Our prayers are being lifted for his family. This sweet man taught us more in 10 minutes than we had learned in the five years Michael had been alive,” said Kara Roberts, mom of son affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. “His efforts to help the ectodermal dysplasia community were very much appreciated!” Besides giving dental presentations at Conferences, he made himself available to talk to families and answer their questions. He not only gave the dental consults but made sure the Foundation had dental chairs to use by driving them to each location for us.

“Dr. Farrington was a wonderful man.” Jana Luallen, grandma to Christyn, who is affected by Goltz syndrome, recalled. “He always made the kids feel so at ease during their dental exams and he always had a joke for them. He was loved and he’ll be missed.”

THE COOKIE MONSTER

Frank was a family man. He loved his NFED family and we loved him. His daughters, Kim and Kristen, attended a Conference on occasion or he sometimes brought one of his grandkids to be in Kids Camp.

In the 1980s, Dr. Frank earned the nickname, Cookie Monster. The NFED’s only employees at the time, Mary Kaye and the late Beverly Meier, would bring their children to Family Conferences. It was these kiddos who bestowed the name on him. Bev’s daughter, Heather Land, was just a little girl then.

“I consulted with Sharon (Richter) Grimes and my sister because honestly, I’m not exactly sure any more why we called him that,” Heather said. “What we remember is he really loved cookies and talked about them a lot. He was so loveable and squishy like Cookie Monster!”

The ever affable Dr. Frank seemed to love the name. Given he was a pediatric dentist, he was always great with children.

BIG THUMBS UP

Many years at Conferences, you could find Dr. Frank in the Kids Camp rooms. He would be sitting on the floor talking to the children about their teeth, how to take care of them and why it was important to wear dentures. To help them understand what dental impressions were like, he’d have them make an impression of their thumbs! He brought supplies and mimicked the process. Each kid went home with their very own thumb sculpture.

It’s impossible to recount here all of the ways in which Dr. Farrington contributed to the ectodermal dysplasias community. His commitment went beyond leading research, speaking at dental symposa or writing articles. In 2003, he also joined the Board of Directors and served as the liaison to the SAC until 2017. He was literally involved in almost every facet at some point in his 40 years of service.

Dr. Frank, who lived in Virginia, would often come to the NFED office in southern Illinois to pick up supplies to drive to Family Conference. It helped save shipping costs! An avid golfer, he was a frequent participant in our annual golf tournaments even though they were half a continent from where he lived. And, he often attended the Halloween Bash in New York City. He simply was interested in everything the Foundation did and wanted to help.

Another pediatric dentist and long-time NFED volunteer, Dr. Tim Wright of the University of North Carolina Chapel Hill, talked about knowing Dr. Farrington.

Frank Farrington was many things to many people – a mentor, father, grandfather, dentist, teacher, and always a friend.  He was a guiding force for the NFED for decades and it was remarkable to see his energy and passion for taking care of kids – especially those that were part of his NFED family.  I had the pleasure of working with Frank in a variety of circumstances but nothing made him shine as much as the days spent visiting with the families at the NFED conferences.  I will miss having Frank as a mentor, a teacher and as a friend.

HE COULD BE SILLY

There wasn’t much that Frank wasn’t game for. In the late 90s, when we played Wheel of Fortune at a Family Conference, Dr. Farrington dressed up like Maxine, the character on the Hallmark cards and did a commercial. As hard as he worked, he was always agreeable to whatever crazy ideas the staff had.

For all of these extraordinary contributions to the NFED family, we were proud to honor Dr. Farrington with the Dr. John E. Gilster Service Through Dentistry Award in 2015.

HE SIMPLY CARED

Perhaps his most lasting NFED legacy will be the children, teens and now adults affected by ectodermal dysplasia who got the dental care they needed…because Dr. Frank was their dentist. Or, because he taught their dentist. Or because he was a leading advocate for the importance of dental care at an early age. Or because he taught parents how to advocate for their child’s needs with their dentist back home.

Tim Catherman, father of Andrew who is now an adult, recounts a time when Frank went the extra mile for his family.

“Frank was wonderful. I’ll never forget the time he rushed a set of dentures because we accidentally flushed them when Andrew was sick. He came to our rescue on a pinch!”

FOREVER IN OUR HEARTS

In a letter dated 1988, the NFED asked Dr. Farrington to continue serving on our SAC. He accepted with these wonderful words that capture Frank’s essence.

“My years with the Foundation have been very special to me. I have learned a lot and I only hope I have been able to give back just a portion of what you have given to me.”

Dr. Frank, if you only knew.

Charley Richer, Mary Kaye’s son, said it best.

“There may not have been a kinder, more caring soul. He positively impacted thousands of lives when they needed him most. Rest in peace, Cookie Monster.”

We thank his four children, Kim Swedberg, Kristin Gaulin, Joe Farrington and Rob Farrington for sharing their dad with us for the past four decades. We extend our sympathy to them, their spouses and the grandchildren he loved so much, as they mourn the loss of the guy they lovingly called “Daddyman.”

He spent most of his dental career at the Virginia Commonwealth University School of Dentistry where he retired as Emeritus Professor of Pediatric Dentistry. Dr. Frank practiced for almost 50 years, and was dedicated to children with special needs. He published numerous journal articles and served as an officer of many professional organizations.

I could not have said it better myself!!

A Visit From A Friend

The friendships that came out of my Dad’s time with the NFED were priceless, one of the closest being with Mary Kaye. Mary Kaye visited my dad and me about a week before COVID shut everything down. I truly believe that this was one of the most special visits that either had because, although they did now know it at the time, they were able to say good-bye. I will always love her for taking that long trip.

Due to COVID, the annual family conference was cancelled for a couple of years. But earlier this year I got a call from the foundation telling me that they wanted to honor my dad at the Gala dinner they have each year. My siblings and I were invited, and I immediately said, “I’ll be there!” My brothers were not able to attend, but my sister and I drove to St. Louis to attend the gala event.

The Gala

Seeing people I have known for a large portion of my life was bittersweet. I loved seeing them and catching up, but it was also super emotional. Countless people shared stories of how my dad helped them and their child. All I could say was, “That sounds like my dad!”

The Gala was wonderful. We ate some delicious food and celebrated the many people who have spent years helping the NFED, including my precious Daddy. I am very honored that I was able to attend this event, and my sister and I definitely felt the love.

Before I left, I followed my Dad’s lead and bought a t-shirt. I have one from every conference he ever attended. My hope and plan is to have these t-shirts made into a quilt for the organization.

For more information about the NFED, please visit their website at https://www.nfed.org/

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