I’m on My Way!

mary_fete_72_dpi    Good evening!

I am in Hayes, Kansas and headed for Denver and then to Colorado Springs.   I am on my way!   We have Tim’s Expedition packed to the max and of course, full of my treats for the drive.

We left last night after Tim got home, a little later than we hoped.  The wind was blowing so hard that I thought we were going to blow off the road!  We arrived in Hayes around midnight.

Kansas feeding America.  One Kansas farmer feeds 189 people + you!


So, I will spend the weekend with my sons and their families.  Traveling with us is a Missouri box turtle for my granddaughter, Callie.  Geez, she takes up half of the back seat.  Yes, I am feeding and stopping to walk a turtle across Kansas!

Callie's present

Callie’s present

My new BFF.

What you do for the ones you love. I am excited to see my kiddos. Isn’t spending time with family just the greatest?

In just a few days, we will all be spending precious time with our NFED family at Family Conference.  I am so excited for this conference and to meet and be with you. It is going to be a great conference.  There will be lots of good educational sessions and fun social events.

Many of our medical and dental experts will also be with us so take advantage of this opportunity to get all of your questions answered. Kids Camp is packed with great activities.  The kids will have a blast and surely be tired at the end of the day.  I suspect the NFED staff will also be pretty tired by night too.  J

But with all times with family, the absolute best part is just being together; laughing and crying together, sharing our stories and making new friends, seeing old friends. We have three wonderful days together.  I am excited!

Some of you may also be on your way and others will be leaving soon.  Safe travels!  The mountains are calling us. Can you tell that I am excited?!

See you in Colorado Springs. The mountains await us!

Sending lots of love and hugs to you.


We are waiting for you!  4 days and 22 hours. But who’s counting?

tim mary

Other NFED Blogs:

Sun Protection

NFED in Our Backyard

A Mom’s Take on the Dental Implant Journey

Sun Protection

Lindsey Harris By Lindsay Harris

Hey NFED family! I have been asked to use my knowledge based in skin to offer you all some information about what SPF is and why it is important!

As we all know, ectodermal dysplasia affects each of us differently. Not only do we have the unique issues that ectodermal dysplasias present, but we are also unique individuals aside from ectodermal dysplasia.

First and foremost, this is general information applicable for most people. Obviously those with different skin or medical conditions (skin erosions, shingles, lesions, etc.) need to seek further consultation with their doctors to discuss the appropriate course of action.

I am a licensed esthetician and NOT a doctor or dermatologist. The information below comes from my education while in esthetics school, various articles and videos I’ve watched about skin and SPF and my experience working in the profession.

What exactly is SPF and why is it so important?

SPF is an acronym for Sun Protection Factor and is a measure of how well the sunscreen will block the UVB rays from affecting or burning our skin. UVB rays are the Ultra Violet (non visible rays that exist beyond the visible light spectrum) rays that cause damage to our skin, cause burning and contribute to the development of skin cancer.

Sunscreens range in strength ranging from 15 -100. The truth about the number behind the letters SPF is that they offer a general guideline for how much protection from UVB rays your skin is getting.

For example:

• it takes approximately 10 minutes in the sun for unprotected skin to begin to show signs of damage (burning) by UVB rays
• applying and SPF 15 means you can stay in the sun 15 times longer (150 minutes) before the UVB rays begin burning the skin
• applying SPF 30 means you can stay in the sun 30 times longer (300 minutes) before the UVB rays begin burning the skin.

These guidelines vary based on the existing pigment within a person’s skin, the intensity of the sun, medications that increase sun sensitivity, time of year and the AMOUNT of SPF used. Most people significantly under apply the amount of sunscreen recommended.

By under applying SPF, you are decreasing the effectiveness of the SPF therefore shortening the time you can be exposed to the sun before the UVB rays begin to cause damage.

So if you want to protect your skin from UVB rays, you should use an SPF of 75 or 100 right? WRONG!

SPF over 50 has been shown to offer little to no additional protection and exists almost only as a marketing ploy to make money and offer a false sense of confidence in consumer consumption.

The scale of protection looks something like this:

SPF 15 = blocks 93% of UVB rays
SPF 30 = blocks 97% of UVB rays
SPF 50 = blocks 98% of UVB rays

You can see the jump between 15 and 30 is significant, but between 30 and 50 is not. The jump between 50 and 75 or 100 is even less.

Most experts agree that an SPF of 15 is the MINIMUM people should wear on a daily basis. Yes, you read that right, DAILY. Rain or shine, snow or sleet.

If the sun is in the sky, there are UVB rays penetrating our atmosphere and causing damage to our skin. If you are intentionally spending time in the sun (beach, baseball, swimming etc) an SPF of 30 or 50 is recommended.

Re-application is important to maintain all day long protection. Therefore, whenever you have spent more time in the sun than the SPF allowance, reapply. Whenever you have gone swimming and wiped off most of the SPF when drying off, reapply. Whenever you have been sweating (for those who can) and wipe off the SPF, reapply!

GREAT! So you are wearing your SPF 15, 30 or 50 daily, you reapply as needed so you are completely protected from the sun right? WRONG. UVB rays are only one of 3 forms of UV rays that affect our skin.
UVA, UVB and UVC rays all are expelled from the sun and come rushing down toward earth. Most UVC rays are burned up within our atmosphere before they get within range of our skin.

UVA and UVB rays impact every single human being every single day irregardless of their age, race, location or income. One of my favorite explanations of the difference between UVA and UVB comes from The Skin Cancer Foundation‘s website:

Most of us are exposed to large amounts of UVA throughout our lifetime. UVA rays account for up to 95 percent of the UV radiation reaching the Earth’s surface. Although they are less intense than UVB, UVA rays are 30 to 50 times more prevalent.

They are present with relatively equal intensity during all daylight hours throughout the year, and can penetrate clouds and glass. UVA, which penetrates the skin more deeply than UVB, has long been known to play a major part in skin aging and wrinkling (photoaging), but until recently scientists believed it did not cause significant damage in areas of the epidermis (outermost skin layer) where most skin cancers occur.

Studies over the past two decades, however, show that UVA damages skin cells called keratinocytes in the basal layer of the epidermis, where most skin cancers occur. (Basal and squamous cells are types of keratinocytes.) UVA contributes to and may even initiate the development of skin cancers.

UVA is the dominant tanning ray, and we now know that tanning, whether outdoors or in a salon, causes cumulative damage over time. A tan results from injury to the skin’s DNA; the skin darkens in an imperfect attempt to prevent further DNA damage. These imperfections, or mutations, can lead to skin cancer.

Tanning booths primarily emit UVA. The high-pressure sunlamps used in tanning salons emit doses of UVA as much as 12 times that of the sun.

Not surprisingly, people who use tanning salons are 2.5 times more likely to develop squamous cell carcinoma, and 1.5 times more likely to develop basal cell carcinoma. According to recent research, first exposure to tanning beds in youth increases melanoma risk by 75 percent.

“UVB, the chief cause of skin reddening and sunburn, tends to damage the skin’s more superficial epidermal layers. It plays a key role in the development of skin cancer and a contributory role in tanning and photoaging. Its intensity varies by season, location, and time of day. The most significant amount of UVB hits the U.S. between 10 AM and 4 PM from April to October. However, UVB rays can burn and damage your skin year-round, especially at high altitudes and on reflective surfaces such as snow or ice, which bounce back up to 80 percent of the rays so that they hit the skin twice. UVB rays do not significantly penetrate glass.”  http://www.skincancer.org/prevention/uva-and-uvb/understanding-uva-and-uvb

By now you are probably saying something, “How do I protect myself from UVB AND UVA rays?”

You want to use a sunBLOCK instead of or as well as a sunscreen. Many people use the words sunscreen and sunblock interchangeably, however there is a BIG difference between the two.

Sunscreens are a mixture of chemical protection that is absorbed into the skin and “screens” the UVB rays before they are able to damage the cells. But sunscreens cannot protect against UVA rays.

Sunblocks provide an actual physical block between your skin and the UVA/UVB rays. They rest on the surface of the skin and literally bounce, scatter or reflect the rays before they reach your skin.

The most common sunblocks are titanium dioxide and zinc oxide. Most people think these are passe and silly looking as they are difficult to absorb into the skin and often leave a white film over the skin.

However there are sunblocks that do absorb and do a great job. Many SPFs on the market offer a blend of sunscreen and sunblock. You’ll want to look for something that says broad spectrum UVA/UVB protection. Ideally they will include titanium dioxide and or zinc oxide.

If you ask me, I’ll take a little white film on my face or body for a few hours over scares for the rest of my life from having skin cancer removed!

Some people may be saying, “This doesn’t apply to me because I have darker skin or I am naturally tan!” WRONG!

Simply because someone is of a darker complexion, does NOT mean damage is not being done. Skin ranges in color from light to dark. In the esthetics and dermatological world we classify skin into 6 categories on what is called the Fitzpatrick Scale:

Just because a Fitzpatrick 6 doesn’t BURN, that does not mean that damage is not happening on the cellular level. It is not as common as someone with a Fitzpatrick of 1 or 2, but it can and does happen.

The problem when it does happen in someone with a darker Fitzpatrick is that because they naturally have darker skin, it is more difficult to detect changes in the skin until the circumstances are significantly more serious. I educate ALL of my clients to simply protect themselves daily and by doing so they SIGNIFICANTLY reduce their risk!

The topic of what is SPF and why is it important is a leading question in that is leads into so many other topics that are all related. So to save time for you and for me here is the bottom line!

Wear your SPF DAILY 365 not matter what your age or race or geographical location!
• Reapply every 2 hours for continued protection.
• Don’t forget your ears, hands and head! A lot of skin cancer happens on ears, hands and heads because people forget these areas.
• Use a broad spectrum UVA/UVB SPF.
• Tanning beds are NOT GOOD FOR YOU ever never ever never ever!
• There is NO SUCH THING as a “base” tan or a “safe” tan – once the skin changes pigment or “tans” the damage has or is being done to the skin.
• Have a yearly body check performed by a dermatologist to help detect skin cancer early.
• Follow the ABCD’s for skin growth/freckles/moles:

A – Asymmetrical? If so, that might be a sign you need it checked
B – Border – does it have a clean, sharp border? If so great! If not and it has a blurry or fuzzy looking border, it might be a sign you need it checked
C – Color – is it all one color? Great! If not, if it is multi color or light brown on one side and really dark brown on the other, you may need to get it checked.
D – Diameter – anything larger than a pencil eraser needs to be checked.

If you have a patch that is red, flaky, bleeds or doesn’t go away, have it checked.
See a licensed, professional and knowledgeable esthetician monthly for facials because they can help track changes in your skin and answer more person or detailed questions you may have!

Editor’s Note:

Lindsay Harris has been a licensed esthetician for 5 1/2 years and a professional makeup artist for over 15 years. She owns and operates Serene Dreams Esthetics, in Plano, TX.

Other NFED Blogs to Check Out:

Keeping My Cool in Heated Situations

Cool Activities for a Hot Summer

My Story

NFED In Our Back Yard!

By Lisa Jonak

Lisa Jonak I

Lisa with her daughter

My son Cory, was about 6 years old before he was officially diagnosed with ectodermal dysplasia during an NFED family conference in Collinsville, IL. Ironically, the NFED was basically located in our back yard.

I did not realize how lucky we were to have this resource so close. They helped us find a dentist close to our home, as Cory’s teeth were the most severe side effect of ectodermal dysplasia.

When Cory was 17, I started investigating having major dental work done to fix his mouth and smile. When Cory was graduating from high school, he applied for the NFED scholarship and was lucky enough to be chosen to receive one.

While he was a freshman in college, we were ready to start the dental plan to have Cory’s teeth fixed. Our dental insurance covered the maximum amount, but we were left with quite a hefty bill when all was said and done. After much consideration, I decided to fight my medical insurance to have them cover the remaining balance. Mary Fete (now Executive Director of the NFED) was a wonderful advocate for us in this process.  After several months of going back and forth with my insurance company, I was victorious in my appeals.

Lisa Jonak Cory Jonak

Cory Jonak

Cory is now a biology major and is pursuing medical school next year. After his sophomore year at Mizzou (University of Missouri), he wanted to give back to the NFED for what they had provided him, and he completed an internship last summer.

In reality, the NFED continued to give to Cory. The experience he received last summer with working with the staff, being exposed to scientific board members and most importantly being around all the kids and families affected by ectodermal dysplasias during the family conference in Ohio, was so rewarding for him in many ways. Little did he know by trying to give back he was going to receive so much more.

During my interactions with Mary, she asked me if I would be interested in helping the NFED to secure a hotel site for the 2016 family conference in St. Louis. I spoke with my husband as I knew there would be a time commitment, and he was very supportive of the idea.

Lisa Jonak at Reunion

Lisa and a friend

I loved the challenge of doing something new and different. I learned a lot and met some very nice people along the way. After I narrowed my search to the top five hotels in the area, Kelley Atchison (Director, Family and Community Programs) and I started making site visits, so I have gotten to know her quite well.

The experience, knowledge and NFED friends I have made along the way has been very rewarding. I’m so glad I did this, and my family and I plan to volunteer in preparing and hosting the 2016 conference in St. Louis. Volunteering can be contagious, and we plan to always be there for our NFED family!

Editor’s Note:

Lisa Jonak is the Chairperson 2016 St. Louis Family Conference and mother of Cory Jonak, past intern and current volunteer.

Learn more about how you can volunteer for the NFED.

Other NFED Blogs of Interest:

Every Moment Has a Meaning by Cory Jonak

Top 10 Reasons to go to Family Conference

Conference – Where You Can Always Come Home to Your NFED Family

Creating Connections of Hope and Comfort

By Rachel Buerman, NFED Liaison

I am a pharmacist and my husband is a special education teacher with a license for both learning disabilities and emotional behavior disorders. For both of us it is important that we are comfortable reading, understanding and analyzing research articles and clinical trials that are published in professional journals. We both take a very analytical approach to problem solving and look for as much data as possible to help us make informed and educated decisions.


Beautiful Jordan!

After our youngest daughter was diagnosed with a type of ectodermal dysplasia called Focal Dermal Hypoplasia (Goltz Syndrome), our analytical minds turned directly to the medical journals and research to find more information. We searched and studied the various medical journals.  We found almost NOTHING. A lot of the journals we found were at best out of date.

With an empty feeling from the small pool of information available, we turned to the specialists. Surely we could find a practitioner that could help us. We went to various appointments hoping that somebody had experience with Goltz Syndrome specifically or ectodermal dysplasia in general.  We went to the dermatology department at the University of Minnesota where the doctor that published most of the journal articles, Dr. Goltz, spent part of his career. While the visit was a good experience and we met Dr. Goltz, we didn’t learn any new information. Some specialists we went to even GOOGLED Focal Dermal Hypoplasia and Goltz Syndrome right in front of us.  For 2 professionals that are used to being scientific-minded and detail-oriented, this was very frustrating and disheartening. As parents we were left thinking “How can we help our daughter if there is no information out there?”

Goltz Buerman

Dr. Robert W. Goltz and the Buerman Family

Fast forward to July 2010. We attended our first National Foundation for Ectodermal Dysplasias (NFED) family conference. We loaded up the car and headed to Colorado Springs, Colorado. We met other families affected by various forms of ectodermal dysplasias including Goltz Syndrome.  This was a life changing experience for us. We learned more by listening to others experiences over a couple of days than we had in all of our previous attempts combined.  This initial experience stuck with us and has turned us into regulars at the NFED family conference.

The NFED family conferences created conversations that turned into a study involving Goltz patients. This event was the largest gathering of patients with Goltz Syndrome EVER. While the doctors collected the data and did their research the families conducted their own studies in the hallways and waiting areas. The families shared life experiences and names of specialists that embraced the syndrome. Children played with others just like them.  Some, for the first time ever. It was during these interactions that we unknowingly transitioned from seeking information to volunteers. We learned that beyond fundraising and all the items that can scare people away from becoming a volunteer, there are connections to be made. Connections that can create hope or be a voice of comfort in a moment of need.

Goltz Buerman II

Part of our Goltz Family at Family Conference

We are involved with and volunteer for the NFED because we believe that together we can move mountains. Together we can help each other. Together we can raise awareness. Together we can conduct the much-needed research. We are honored to say we are part of the NFED and can’t wait to see what the future holds.

Editor’s Note: 

Rachel Buerman lives in Minnesota with her husband Chris and their two children. Her daughter Jordan is affected by Goltz syndrome. Rachel volunteers as a Family Liaison for the NFED.

Are you interested in volunteering for the NFED? Visit the NFED Helping Hands page.

Other Blog Posts You May Enjoy:

Volunteers are Love in Motion!

Not a Family Conference, It’s a Family Reunion

Overwhelmed with Love and Belonging

A Mom’s Take on the Dental Implant Journey

By Tina Moss

Being a mother is challenging. Being the mother of a child with hypohidrotic ectodermal dysplasia (HED) takes challenging to another level. After our son Jacob was diagnosed with HED, his father and I knew that he would require a lot of dental work culminating in implants when he was a young adult.

As a carrier I have some of the symptoms of HED, one of them being a number of missing teeth, and I had some significant baggage where dentistry was concerned. The specter of putting my only child through the long dental implant process felt insurmountable to me.

I was consumed by rational and irrational fears to the point of having to run out of an implant seminar during a NFED family conference five minutes after it started.

Jake was quite young at the time, only four or five, but the prospect of what he was going to face later in life was too much for me. I bolted. Jake’s father stayed, gathered information, and came away excited about the advances being made in implant technology. He assured me that by the time Jake was ready it would be a whole new world. Yeah, right. I still felt like throwing up.

Fast forward 20 years and Jake’s implant journey is finally over. He is the proud owner of a glorious set of teeth. They are his own as much as any teeth he might have grown himself, and no one would ever know they’d been fabricated in a lab.

Jake survived, his father and I survived, and now with the luxury of hindsight, I can say that while difficult and scary at times, accompanying Jake on his implant journey was an experience in which I grew as a parent.

I learned to let go and trust my child, and came though with flying colors in a way the terrified mother of four-year-old Jake would have thought impossible. Much of this is due to Jake’s courage and strength of character, as well as the skill, dedication and kindness of our dental team.

After a false start with a prosthodontist who instilled more anxiety and confusion than confidence, we were referred to the oral surgeon who did Jake’s upper jaw bone graft and implanted a total of ten screws in his upper and lower jaws, and the prosthodontist who engineered and oversaw the manufacture of his teeth.

I can’t stress enough how important it is to have medical professionals you trust, who will take the time to explain things to you and your child, more than once or twice if necessary, and who collaborate well together.

Jake’s oral surgeon, Peter Moy, D.M.D., and his prosthodontist, Harel Simon, D.M.D., were exemplary in every way. Due to the complicated nature of Jake’s case, they spent hours meeting to discuss, plan and engineer the transformation of Jake’s jaw and the placement of the implant screws.

These two men enabled me to let go of some of my trepidation and fear over what Jake would be going through and about the eventual outcome. I also realized I had to deal with and let go of my personal dental baggage in order to be the kind of mother I wanted to be for my son as he embarked on what would end up being a five-year process.

Jake got through his multiple surgeries with remarkable maturity and an absence of external drama. He healed quickly and had minimal discomfort. I hovered over him, checking, asking questions, forcing soft foods on him and obsessing until I figured out that I needed to do these things more for myself than for him.

I knew Jake struggled with anxiety about many aspects of what he was going through, and I tried, probably unsuccessfully, to mitigate some of this, but at a certain point I had to have faith that he would ultimately be okay.

For me, a huge turning point in the entire adventure occurred after Jake’s surgery to implant six screws into his upper jaw bone. Once the surgery was over, I was escorted into Dr. Moy’s consult room where I found Jake in a wheelchair still woozy from general anesthesia. Dr. Moy showed us the postoperative x-ray of Jake’s jaw with the newly implanted screws in place.

As I stared at the image on the computer screen I felt a shift inside of me. What I saw was not only six perfectly vertical titanium screws in Jake’s jaw but also an amazing and beautiful image in and of itself.

Art and technology combined; all there implanted in my son’s jaw. While I held onto a healthy amount of fear and concern about bone graft or implant failure my outlook veered more in the direction of excitement and anticipation.

Jake was a freshman in college when he underwent his surgical procedures and was able to get himself to and from his follow-up appointments with Dr. Moy and the many appointments with Dr. Simon as he began the painstaking work of creating the perfect set of teeth to attach to the ten screws in Jake’s mouth. This took a very long time and after the first few appointments to which I did accompany him, it dawned on me that I was no longer needed.

Jake made his own appointments and communicated with Dr. Simon through text and email when he needed to. He started the implant process as a teenager but was now a young adult who, by the time the permanent teeth were done and in his mouth had graduated from college, no longer lived at home and had a job. When the implant process began it seemed as if it would never end.

Now that it is finally over, Jake’s smile is beautiful to behold. Not just because of the teeth but because of the confidence and maturity that smile exudes. As a parent, this is the best reward I can imagine receiving after all the years of planning, worrying, and wondering how it would all turn out.

I wish I could travel back in time and tell the terrified mother who rushed out of the implant session so long ago that all would be well. That there would be some difficult times but that her amazing boy would not only survive, but would thrive as a result of his challenges, and so would she.


Tina with her husband Richard and son Jacob.

Read Jacob’s perspective on the dental implant process:

My Smile – 23 Years in the Making

My Smile – 23 Years in the Making – Part 2

My Smile – 23 Years in the Making – Part 3

Read another Mom’s perspective on the earlier stages of dental care:

Keegan’s Denture Adventure – Part 1

Keegan’s Denture Adventure – Part 2

Keegan’s Denture Adventure – Part 3