A Chance Meeting Changed my Life!

Frank Farrington    By Frank Farrington, D.D.S., M.S.

Affiliated with the Medical College of VCU, Dept. of Pediatric Dentistry, Richmond, VA

Why have I stayed involved with the NFED and the Scientific Advisory Council, Patient Care Council, and the Board of Directors for so many years?  The answer is very simple.

Frank Farrington Award

Dr. Frank Farrington receiving Award from Mary Kaye Richter, founder of the NFED

Dr. Frank, Denyse and Delores

Dr. Frank with Denyse and Delores from Illinois

When you are on the faculty of a dental school that decides to start a genetics program in your department. When two top dental geneticists come from Johns Hopkins University to start it. When you see and treat your first child with ectodermal dysplasia you certainly get interested. When you meet a wonderful young mother from southern Illinois with a young child with this rare condition very few people have heard of, especially when that certain mother is Mary Kaye Richter, the founder of the NFED , you are hooked,  After you attend your first family get together and meet the families you are forever involved.  The NFED has offered me so much in my professional and personal life. I have grown with the foundation from the start and will continue to make a difference in the lives of those affected by ectodermal dysplasias.  It is my destiny!

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Dr. Frank at the Family Conference’s Dental Evaluations with Posey

As a dentist I have been able to meet with other clinicians to discuss and learn the latest treatment technics that have been developed. As an educator I have been able to teach what I have learned so that others can provide the needed care, especially for children with ectodermal dysplasias. I have been able to meet many of the leading researchers and clinicians in this country and around the world. To be involved in the first meetings to discuss the development of possible genetic treatment for ectodermal dysplasias that has developed into ongoing clinical trials. At Family Conferences through the years to watch infants develop into mischievous little kids, healthy teens, and productive adults raising families of their own. The lifelong friendships I have made. Why stop now? There is still so much to learn, to do, and to achieve.

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Dr. Frank at the Dental Evaluations with Jade

I will never be able to give back all that I have gotten from that first contact from a mother on a farm in Illinois, my dearest friend Mary Kaye Richter. Thank You!

She Was One of the Founding Families as a Toddler in 1981. Today, She’s an Advocate for the Community.

Joanna Nix

Hi there,

My name is JoAnna Nix and I volunteered last fall to help represent the NFED at my local Combined Federal Campaign (CFC) and State Campaigns.  The NFED is known as the Skin and Dental Dysfunction Foundation #10604 by the CFC. Being a government employee, I’ve seen that government workers really do care about their communities and want to give back through some form of charity.

I volunteered at this CFC Rally to tell potential donors about the ectodermal dysplasias

I volunteered at this CFC Rally to tell potential donors about the ectodermal dysplasias

Giving back by way of monetary donations is made easy through a payroll deduction system that is already in place. They just elect to do so and choose their favorite charities to receive their donations.

What is great about these campaigns is that government workers take a break from their regular day and get the opportunity to meet some of the people behind their favorite causes and the strides they are making as a result of charitable donations.

They also have the opportunity to learn about charities that are not widely known. The NFED is definitely a charitable cause that not many have ever heard of and being represented at these campaigns is a way for us to spread awareness and become one of their favorites! You don’t have to be a government or state employee to voluteer at the CFC and/or State Campaigns.

Here I am at another rally helping to raise awareness.

Here I am with a non-government NFED volunteer at another rally helping to raise awareness.

Being an individual affected directly by ectodemal dysplasias (I was born with EEC) is also a very impactful way to help represent the NFED at these campaigns.  In most introductions, if not all, they are learning about ectodemal dysplasias for the very first time and what better way for them to learn about ectodemal dysplasias than through someone who has it and can testify personally on how wonderful the NFED has been in supporting our community.

The CFC and State Campaigns are a great outreach practice for not only gathering additional funding for the NFED, but for educating the public and creating an awareness about ectodemal dysplasias.

JoAnna Nix and her family were one of the original dozen families who founded the NFED in 1981 when JoAnna was just a toddler. Her blog is a part of our Helping Hand series featuring incredible NFED volunteers. Read more stories.

Inspired to volunteer for the NFED? Email Lea Richardson, NFED manager, community engagement, at lea@nfed.org or call her at 618-566-6871. You can also learn more on our website about volunteering. 

Dental Treatment Shopping

The most frequent questions, comments and challenges that the NFED staff hear are related to dental treatment, dental treatment access and finding a dentist who can provide the treatment. I don’t think that this has changed much since the foundation was started. We still get lots of calls saying that the dentist won’t provide treatment until the age of 18 or so and won’t make dentures for a child.

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Really? Why is that when we know that children can successfully wear dentures after the age of three? We still hear the same old excuses like “the child won’t cooperate” or “the child won’t wear the dentures” as reasons not to begin treatment. How do you know a child won’t cooperate with treatment or wear the dentures unless it is tried?  Look at all of these young children sporting beautiful smiles

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What should you do if your dentist tells you that your child is too young for dentures?  You should absolutely find another dentist and get a second opinion.

Teeth are important for facial structure, chewing (nutrition), self-esteem and speech. Imagine that!  Teeth being medically necessary rather than cosmetic in nature! Whew, that is an entirely different subject that really gets me going. I will save that for another time.

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Another reason dentures are important for these children is because they likely have diminished saliva to help digest food. Can you imagine chewing and digesting your food if you have less saliva AND only a few teeth?

If a child starts wearing dentures at an early age; they will develop a lifelong habit of wearing the dentures and (hopefully) taking care of their teeth. Putting their teeth in will be like putting their shoes on.

BoyWithHEDWearingDentures

Children who society may perceive as looking differently – including not having teeth – can be teased and bullied. We all know that sometimes kids can be mean and that the victims of bullying can suffer devastating damages to their self-esteem and quality of life.  So why not just see if these youngsters can wear dentures?

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The trick with this whole process is making sure the child has age-appropriate dentures that are the right size and fit appropriately. The second step, of course, is for parents to insist that they wear their dentures just as they would if they needed glasses.IMG_1434 (2)

We also hear that the ONLY treatment that will be successful is an implanted supported treatment plan that costs well over $50,000-$100,000. I just can’t imagine!  Who has that kind of money? You can buy a house or several cars for that.

One of our experts once told me that this can be compared to driving a Cadillac or driving a Volkswagen; they both get you where you want to go. However, one is the top of the line and much more expensive.

Lots of us can’t afford the Cadillac!  Thankfully, there is always an alternative if you can’t afford a Cadillac. The same is true with dental restoration plans; there are always several treatment options.

Grant LR

Bottom line and take home message: There is nothing wrong with getting a second opinion or asking your dentist for an alternative plan. As a matter of fact, many times it is the absolute best plan.

If you have questions about what age appropriate treatment options there are, contact our office for a copy of our Parameters of Oral Health Care for Individuals Affected by Ectodermal Dysplasia Syndromes. This publication will apprise you of an experienced, expert panel’s recommendations for care.

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From Debbie, mom to 3-year-old Jackson

“Jackson having dentures has meant a great deal to us. Since getting his teeth when he was four it has empowered him to make choices with regard to what he wishes to eat, rather than choose based on what he can eat.

Since Jackson has had his full set of teeth, it has given him the confidence at an early age to celebrate his smile, and recognize that it is our differences that make special and extraordinary.

Jackon’s side:

“I like my dentures because it lets me chew food that I was not able to before I had them.

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Why I Volunteered to Participate in the Edimer Research Trials

Liam Feb 2015

Steve and I with our little guy

By Beth Orchard

My husband and I enrolled our two-month-old son, Liam, in the XLHED Newborn Clinical Trial less than two weeks after he was born.

Even before pregnancy I knew about the study and, if we had an affected son, would enroll him. There are many reasons but the greatest one was this: to give him a chance at a better life.

Liam two weeks old

Although I’m mildly affected (by x-linked hypohidrotic ectodermal dysplasia or XLHED), we didn’t know whether our son would be. As it turns out he may also have more mild symptoms but will still not get many of his baby teeth and will not sweat like other kids.

Our decision to participate rested in a strong faith and hope we have that this research will not only benefit him but future children born with XLHED. Knowing our son, at such a young age, was contributing to a cause greater than himself was another big reason we chose to participate.

The other reason we enrolled Liam was because of our NFED family. The NFED’s Treatment  Assistance Program helped me cover costs of getting my implants, crowns and necessary dental work done. Their resources have helped me and my family learn about mine and other ectodermal dysplasias as well as Edimer’s research opportunity, ways to engage with others similarly affected and provide love and support (as any family does).

Sarah and Drew Yaroch and NFED Executive Director May Fete visited us in the trial to offer support. Drew also participated in the trial when he was a newborn.

Sarah and Drew Yaroch and NFED Executive Director May Fete visited us in the trial to offer support. Drew also participated in the trial when he was a newborn.

In fact, three of my “family members” from NFED came to visit us in St. Louis during the clinical trial to lend support and a shoulder to lean on. Without the NFED family, I wouldn’t be as strong and confident as I am that I can tackle XLHED head on and now support my son as he does the same.

“Strive not to be a success, but rather to be of value.” –Albert Einstein

Beth’s blog is a part of our Helping Hand series featuring incredible NFED volunteers. Read more stories.

Inspired to volunteer for the NFED? Email Lea Richardson, NFED manager, community engagement, at lea@nfed.org or call her at 618-566-6871. You can also learn more on our website about volunteering. 

Together, We Will and Can Make a Difference!

Claeys, Julie 2011By Julie Claeys

When our son, Carver, was diagnosed in 1995 with hypohidrotic ectodermal dysplasia (HED) at just four months old, we found the NFED. I remember talking with Beverly from the foundation and her peaceful, calming voice assured me that they were there for us.

Julie and Carver, when he was a baby

Julie and Carver, when he was a baby

It wasn’t long before I found myself selling raffle tickets for an NFED fundraiser and raising awareness about ectodermal dysplasias in our community. I was so appreciative of the amazing ability of our founder, Mary K. Richter, who started the NFED in 1981 for her baby boy, Charles, who was affected by HED, and other families. I, too, felt compelled to do the right thing and help in anyway I was able.

One of several newspaper articles featuring Julie and Carver

One of our several newspaper articles highlighting ectodermal dysplasias

Throughout the last 20 years, we have fund raised, talked about HED on our local news station and have been featured in numerous community newspapers. We also wrote a book called Carver’s New Smile about getting dentures. We raised awareness at school and passed out medical brochures to area dentists and physicians.

Carver at one of their NFED fundraisers

Carver at one of our NFED fundraisers

It was and still is my responsibility to continue to support this foundation that empowered us to raise our son with the proper tools to manage ectodermal dysplasia. Of course, over the years we have gained such valuable gifts no one could have predicted, such as the relationships our son has benefited from by meeting and knowing many other families affected. He knows first hand that he is not alone in this world with a rare condition.

Carver can tell you that this is the utmost comfort in his life to have attended so many Family Conferences and experience his connection to others affected.  Since our first Family Conference, I have felt as if you all are my family. I serve as a volunteer to help the people in my NFED family.

How could I ever repay this valuable gift that keeps giving?  I feel a passion to serve the foundation and am a member of the Patient Care Council and the Family Support Council.

As of today, I am also a part of a committee to inform legislators about the need for proper medical insurance coverage for people affected by ectodermal dysplasias. The need for medical insurance coverage alone for dental care is the single, largest expense for most families.

Why should a family have to sell their family automobile or home in order to afford dentures or dental care for their child? These dentures also need to be updated many times throughout their long lives creating greater and ongoing expense.

Julie and Carver, now 20

Julie and Carver, now 20

Our son at 20 years old has acquired more than $50,000 out-of-pocket expenses for dental care alone!  And this is with a good insurance policy but does NOT cover dentures or implants. The need for insurance policy changes for our children and adults born with these congenital abnormalities needs to include medical coverage to correct this birth disorder and that means dental services.

I am passionate about being a volunteer on this committee and hope to bring about this needed change. I also feel strongly that every child and adult affected by ectodermal dysplasias should be able to obtain the proper care and attention that they deserve.

Our committee’s goal is to have a great presence at the U.S. Capitol at the Family Conference in Washington, D.C. in 2017 – with your help! The more Helping Hands that volunteer, the better the future for our kids.

Join us! Together, we will and can make a difference.

Craig, Maria, Julie and Carver Claeys

Craig, Maria, Julie and Carver Claeys