Richter Receives NFED’s Highest Research Award

MKRAward72

Mary K. Richter

Our founder, Mary K. Richter, received a standing ovation as she was named the Kenneth S. Brown, M.D. Research Award recipient for her monumental impact on ectodermal dysplasias research.  Timothy Fete, M.D., M.P.H., from the Scientific Advisory Council (SAC), presented the award to Mary Kaye at the Saturday celebration dinner at the Family Conference in July.

Dr. Fete credited Mary Kaye for understanding the importance of research when she started the Foundation and having the vision to create and execute a program that has made so many successful discoveries. He lauded her ability to speak to the world’s leading researchers and scientists and persuade them to take interest in these rare conditions. The program under her tenure led to the development of a treatment for XLHED being tested in clinical trials; and started AEC syndrome and Goltz syndrome on similar paths.

The award has only been given five other times in the NFED’s 33-year history. It is named in honor of Dr. Ken Brown, who served on the SAC from 1983-1988. He made significant contributions to ectodermal dysplasias through his work at the National Institute of Dental and Craniofacial Research.

Past Recipients of the Kenneth S. Brown Research Award

1991 – Newton Freire Maia, M.D.

1993 – Jonathan Zonana, M.D.

1996 – Juha Kere, M.D., Ph.D.

2001 – J. Timothy Wright, D.D.S., M.S.

2006 – Margret Casal, V.M.D., Ph.D., Pascal Schneider, Ph.D., Olivier Gaide, M.D., Ph.D.

Dr. Tim Fete presents the Ken Brown Research Award to Mary K. Richter.

Dr. Tim Fete presents the Kenneth S. Brown, M.D. Research Award to Mary K. Richter.

Ectodermal Dysplasias in the Workplace

Choosing a Career Path with Ectodermal Dysplasias in Mind

I’m not very old, but already I’ve experienced a variety of career fields. From an early age I loved to draw, build, create, imagine. I didn’t consciously think about what I wanted to be when I grew up. In fact, that was one of those questions I struggled to answer. While other kids said they wanted to be a ballerina, a fireman or a teacher, I would shrug my shoulders and say “I don’t know!”  I pursued activities that were related to my interests, so I took a lot of art and music and enjoyed spending time out in the woods exploring nature.

As high school drew to a close and I had to figure out what I wanted to do in college, I decided I wanted to be a children’s book author and illustrator. Reading and enjoying the artwork in children’s books had been an important part of my childhood. As a teenager, I hadn’t lost that childlike sense of wonder about the world and the love to explore new places and concepts through books. After a few semesters as an art major, I dropped out of college. Not because it was hard or challenging, but because it was neither of those.  I wanted to push myself out of my comfort zone and see what else was out there.

Over the next decade, I worked as a customer service rep and then an account manager at a dental supply manufacturer (oh, the irony), I worked in a shipping warehouse (fun!), I worked at a flower farm (exhausting) and at an insurance company (yawn!). I went back to school and got a bachelor of science in landscape architecture, and then continued on to become a certified master gardener. I volunteered at a youth prison where they had a vegetable garden. Never once did I consider that my EEC might limit me in any of those pursuits, although the heat did eventually become a deterrent to working outdoors full-time.

My current career field is in marketing. Most days are spent in a temperature-controlled office environment, which is ideal. I used to think that working in an office environment would be horribly boring and soul-crushing, and believe me, I’ve worked in some offices where that is true. Fortunately, the place I work now is not like that at all. Since one of my duties is to help with organizing and hosting events, I get to spend a lot of time away from my desk. I even get to travel!

Your Syndrome and Interviewing

For much of my life, I pretended that I did not even have EEC, and that no one else would notice it. I treated my hands and my cleft scars as two separate issues. I figured that most people knew what a cleft lip and palate was, and so I didn’t feel that it needed any explanation. My hands were easily concealed under a table during interviews and so I told myself that people didn’t even notice them.

Once, I was applying for an internship, and after showing my portfolio to the interviewer, she shook her head in amazement. “Your drawings are so beautiful, and you’re… challenged!”, she said, eyeing my hands. It opened up an opportunity to discuss my hands, but I was irritated that she’d noticed. Instead of using the moment to educate her, I responded that I didn’t know how people with five fingers managed to draw or write with all those extra fingers.

Many years later, after some attitude adjustments, my hands came up again in an interview. This time, it was I who brought them up and talked about how I didn’t let little “challenges” hold me back in life. I got the job, hands down.

Discussing Your Syndrome with Your Supervisor or Co-workers

At no time in my professional career have I sat down with any of my bosses and laid it all out on the table. Most of my supervisors had no idea I had any kind of syndrome – just that I had a cleft lip and palate and some hand defects.

As I mentioned before, when I was younger, I was pretty defensive if anyone suggested I might not be able to do something on account of my hands or for any other reason. I did not tell anyone that I was sensitive to heat, or that I didn’t like being out in the sun. Instead, I would suffer through situations, gritting my teeth and telling myself I just needed to be strong. I didn’t want to give anyone reason to think I was weak.

The last time I worked at a job that involved being outdoors, I did explain to my boss that I was struggling with the heat and the sun. At the time I was still not fully comfortable discussing EEC, so I didn’t give him the whole story, but just enough so that he would understand my limits. He did work with me to arrange my schedule in a way that kept me out of the sun at the hottest parts of the day.

In the last several years I have become more open about my syndrome. A lot of my co-workers are Facebook friends with me and have seen photos of me with my NFED Conference friends. This has spurred some discussion with people who were curious to know what the NFED was and why I was involved. Depending on the level of trust I have with the person, I share what I feel comfortable sharing. All of the interaction I’ve had with co-workers asking about my syndrome has been positive. I don’t go around flaunting my differences, but I am not ashamed or shy about discussing them either.

My current supervisor is aware that I have hearing loss, though this is not something that is usually apparent in my day-to-day work. Since most of our work is indoors in air-conditioning, I do not worry about overheating.

Daily Reminders 

At first glance, I don’t think that EEC affects my work day. The reality is, that it is as much a part of who I am as say, being a woman. There are things that I experience each  day that are related to my syndrome, but I am so used to them that they often go without notice. For example, my nose runs a lot. I always keep a tissue box on my desk and bring a clean tissue whenever I have to step away from my desk. I am also self conscious about getting food stuck in my (artificial) teeth, so I keep a small mirror at my desk and in my purse so I can check my teeth whenever I eat. I carry disposable toothpicks and floss so I can clean around my implants during the day. It’s no fun having a pesky piece of spinach wrapped around an implant post.

My eyes are probably the biggest daily battle. In one day my eyes can go from being dry and scratchy to excessively teary to painfully dry or just plain painful. If I am diligent about putting my eye drops in, I can ward off some of the discomfort. However, putting in eye drops can be a hassle in itself. If you’ve ever tried to read text on a computer screen with blurry eyes, you know what I mean. By the end of a long day at work, my eyeballs are usually the most tired part of me.

Another aspect of EEC that arises somewhat regularly is the handshake. It’s not every day that I meet someone new and shake their hand, but when I do, it’s interesting to observe their reactions. Most people either don’t notice, (or they are really good at pretending they don’t notice), but occasionally people will do a double-take or a discreet glance to see what’s going on down there. The worst was one woman who literally bent her head forward to stare, open-mouthed at my hands our hands parted. It was so ridiculous I almost laughed out loud.

Overall, I would say that yes, there are aspects of my syndrome that can be annoying and some days even a deterrent to having a productive work day. Fortunately I am able to manage most of my “issues” and they are just an accepted part of my daily routine. I am really thankful for my current job, where the air-conditioning flows freely and I have a flexible schedule that allows me to go to the various doctor and dentist appointments that I need. (That’s another aspect of EEC – lots of specialist appointments!)

In Conclusion

Of the people I know who have EEC, I don’t anyone who has let their syndrome prevent them from pursuing their dreams. We can write, type, wear gloves (maybe a little differently than you do), sew, use scissors, etc. Life might not work out exactly as you anticipate, but with an open mind and creative thinking, you can be successful in whatever it is you want to do. Shoot for the moon!

 

A Gratifying Homecoming

Wow! What a great Family Conference!  If you attended, what was your favorite part?  Mine was spending time with all of you, the families.  It was gratifying to see all of the families and kiddos hanging out, having fun and sharing tips and stories.  The conference was full of good times, with lots of laughter, some tears, but definitely lots of love with our NFED family.

Kelley Atchison and Amy Rush

Whew! Getting set up is serious business. They look pretty intense, huh? Pictured are staffers, Kelley Atchison and Amy Rush.

 It is really hard to say what the best part of the conference was.  We started with the XLHED Women’s Forum on Wednesday.  Women affected with XLHED had the opportunity to talk together and to learn about genetics, family histories and EDI200.  It was a very emotional and impactful workshop and I was happy to be part of it. 

Group of Women at XLHED Women's Forum

Our wonderful group who participated in the XLHED Women’s Forum.

How about our Liaisons? They did quite a job with the pep rally, performing their cheer and organizing the Minute to Win It games. Go Liaisons!  The best part was seeing Jack Kriz as a cheerleader in a skirt.  What a hoot.  Go Jack!

Liaisons

Our liaison cheerleaders.

We started Thursday with words of wisdom from our founder, Mary Kaye Richter. For those of you who know Mary Kaye, you know that she never is at a loss for words.  She made us laugh. She made us cry. She made us think. We love you, Mary Kaye! Xo

Mary K. Richter

Mary K. Richter

And, of course, it was fun meeting new friends and seeing returning friends.  This is my favorite part: just hanging out and getting to know you and your children.

Mary Fete and her friend.

Making friends at Kays’ Kids Camp

Emma, I thought you were going to call me?

Emma, I thought you were going to call me?

Mary Fete with two girls

These twins had lots of energy!

MaryChild

 

See Terri. You made our Wall of Fame!  Everyone makes the NFED Picture Wall of Fame. (With Terri is Kelley Atchison.)

See Terri. You made our Wall of Fame!     Everyone makes the NFED Picture Wall of Fame!

StaffAlly

Cory the Intern Jonak, Lea Richardson, Amy Rush and Ally Kelso

Norma MacDonald

Norma MacDonald and Jodi Edgar Reinhardt

All of the work it took to plan the Ohio event was worth it when I watched the kids make new friends, laugh and play games in Kays’ Kids Camp. It simply filled my heart with such happiness to see all of the energy and laughter in those rooms.

kids camp 2

The children enjoyed learning about animals from the Columbus Zoo.

kids camp

The magician was a big hit at Kays’ Kids Camp.

The teens stayed busy and out of trouble for the most part.  They had a field trip every day. They visited a museum, an arcade and ice cream parlor.

Ice cream is always a big hit with teenagers!

There were lots of times to socialize and to learn all about ectodermal dysplasias and treatment options.  And let’s not forget about the dental exams!  Our wonderful dentists conducted 92 exams in a few short hours! It was crazy, but we had quite an efficient crew.  Families truly value this opportunity to have a free evaluation from a dentist who is an expert in ectodermal dysplasia.

Dr. Frank Farrington discusses dental options for Erin with mom, Shannon Brown.

The kiddos – little and big – enjoyed dropping their tickets into the bags at the Chance Auction. It was a fun way to help raise some funds to offset Conference expenses.

chance auction

We raised more than $1,600 with our Chance Auction. Thank you families for donating items and participating!

And, how about all of that NFED talent? We had more than 30 acts sing, tell jokes, play the piano and dance. It’s always a highlight of the Conference, and this year was no different.

Songs from the movie, Frozen, were a big hit this year at NFED’s Got Talent.

Coming back from the Family Conference and catching up with emails and things left undone is always quite a challenge. We’re all physically, mentally and emotionally exhausted. But, the days at the conference were amazing and that positive energy stays with us throughout the year. The staff is ready to work with you to accomplish great things.

On behalf of the entire staff of the NFED, I thank the families who attended for sharing four extraordinary days with us in Ohio last month at Homecoming 2014. Plans are already underway for next year’s Conference in Colorado Springs, July 23-25.  Join us in the Rocky Mountains as it is going to be another phenomenal conference.

How could we have more fun?  Wait until Colorado!

Call us; we would love to hear from you.  Lots of hugs and love to you and your families.

NFED Staff

NFED Staff

Cool Activities for a Hot Summer

Summer time is upon us and that means there will be some incredibly hot days. For those of us that can’t sweat properly, it’s especially important to have some cool activities for those hot summer days. We allowed Mister, our 6 year old that is affected by Hay Wells Syndrome, to join the swim team.  Here he is, swimming his heart out.  goals should never be easy

Not everyone has access to a swim team, or the time to devote to it, so I wanted to share ideas for other cool activities your kids (and probably you) are sure to love…

Splash Pad

If you’ve never visited a splash pad with your children, you’re totally missing out. I typically love heading to a nearby splash pad because they are either free or really inexpensive. It can be a little safer to take all of the kids to something like this instead of watching multiple children in a pool. It’s still important to take safety precautions tough.

Water Obstacle Course

You probably have plenty of items lying around your home to create a water obstacle course. Fill plastic cups with water, fill a pool with ice cubes and water, create a slip n’ slide with a tarp. This is one fun way to use your imagination when it’s extremely hot outside and the family just wants to cool off.

Make Your Own Frozen Treats

It’s one thing to play in water on a hot day, but it’s another to create and eat your own frozen treats. You can create your own popsicles by pouring Kool-Aid into a mold and then freezing. If you’re up for making a little cash, consider starting your own lemonade stand for the day with the kids. The kids get to have unlimited lemonade, while you sit back and enjoy watching them learn how to start their own little business.

Mini Car Wash

I think this is such a fun idea for kids. Set up a mini car wash for the kids. They can wash their bikes and cars in the mini car wash and it doesn’t take a lot of ingredients to make this cool activity fun on a hot summer day.

Indoor Pool

When it’s hot outside, everyone thinks of swimming outside, but what about swimming indoors? There are plenty of indoor pools that allow swimming. Consider your local YMCA or perhaps renting a hotel room for the night makes sense. The benefits of an indoor pool are that you do not need to worry about sun burning.

Water Science Experiments

When it’s hot outside, playing in water in any way shape or form is a bright idea. Consider some of the following science/water activities.

  • Mixing oil and colored ice together. It’s fun to see the little puddles of color that form from the oil and colored ice.
  • Creating ice balloon balls (also known as ice marbles) is something your kids will love. All you do is put Kool-Aid powder plus water into a balloon. You’ll want to place them in the freezer.

There are tons of cool activities you can do with your kids on a hot summer day. My best advice is to use your imagination and have fun.

What are your favorite cool activities for a hot summer?

Keeping My Cool in Heated Situations

It’s field day! Out in the fresh grass while the sun blazes down from a perfect blue sky, I feel dizzy with excitement. Our team is doing well in the relay races and I’m having fun being outside the classroom. Suddenly, my teacher pulls me aside. “You’re bright red!” She looks panicked. “Come with me, we have to get you inside!” I am whisked into a car and driven around to the front of the school.

The school doesn’t have air conditioning, except for a window unit in the principal’s office, where I am instructed to relax on a couch and drink water. The school nurse puts cool cloths on my forehead and my dizziness begins to subside. I am calm, but mellow, as I lie there listening to the hum of the air conditioner while my friends shout and play outside. That was second grade. It’s the first time I can remember the heat getting the best of me. But it wouldn’t be the last.

 

Visiting Plymouth Village on a hot summer day, we sought refuge in a hay shed.

Visiting Plymouth Village on a hot summer day, we sought refuge in a hay shed.

I grew up in the 80s. We didn’t have air conditioning in our house, in our car, or in school. I knew that, due to my ectodermal dysplasia, I was susceptible to overheating, but I didn’t usually give it much thought. This was just my normal, and that meant feeling tired or grumpy on occasions where it was hot and I was not able to cool off. Usually it was my mom or a concerned teacher who would note that my face was bright red and that I should probably stop running around like a maniac and cool down. Even as I got older, into my teens and early 20s, I would continue to push myself to endure situations where I very nearly could have given myself heat stroke. (Did I mention that I have a stubborn streak?)

 

Pure joy!

Pure joy!

 

When I was a kid, I basically lived in our swimming pool all summer. Even now, I can just close my eyes and imagine the relief of my hot skin sliding into the water. Then, a moment of bliss, as my head plunges beneath the surface, sounds are muffled, and every part of me is relaxed. If I wasn’t in the pool, we were at the beach, or a water park or at the very least, jumping through the sprinkler. I’m telling you, I spent most of the summer in a bathing suit.

Heat intolerance isn’t limited to the summer months. Sometimes the winter can be just as bad, with the dry air and overly warm indoor spaces. I learned that getting myself worked up emotionally was also a factor in getting too hot. I wrote about my experience with overheating and itching while at the dentist in this post on my personal blog.

Despite not being cut out to handle the heat, gardening has been one of my lifelong passions. I spent several years working on farms, growing everything from squash and tomatoes to day lilies and tropical citrus. In the earliest days of farm work, I suffered a lot. Some days I would come home with a raging headache, and quivering limbs.

I soon learned to bring lots of water and to force myself to drink as much as I could, even if I didn’t feel thirsty. I tried cooling vests and bandanas with crystals which were supposed to hold water and keep you cool. Instead, these trapped my body heat and made me feel worse. 

I learned to take an old, long-sleeved, cotton button-down shirt and plunge it into a bucket of cold water. Then I’d wring it ever so slightly, and put it on over my tank top. The cool fabric would suck the heat out of my arms and torso almost instantly. Of course the shirt would dry out within minutes, but it was more comfortable for me than the vests or other things I tried.

I would also fill a bucket with cold water and step into it to cool off my feet. My feet are one of the areas of my body that don’t sweat at all. I often refer to them as my “hot potatoes”, because even in the winter time, I have to stick them outside of the bed covers at night or else they get too hot. Working at a job where I had constant access to a hose also allowed for me to spray myself whenever I needed. Cold well water is a beautiful thing.

Another way to keep myself from overheating on the farm was to work with my boss to create a good schedule. I would start work really early in the morning so I could avoid the afternoon heat. I also requested that I be able to do any work in the greenhouse first thing, so I could be out of there before it turned into a stifling oven of death. I made efforts to avoid the sun, or to wear a wide-brimmed hat when I had to be out in it. Of course, drinking lots of water and taking breaks if I began to feel too hot or dizzy was also important.

Finally, as I alluded to before, keeping calm really does help keep you cool. There have been many times where I’ve gotten worked up for some reason or another (I am one of those “overly sensitive” people), and my body heats up like a furnace.

One incident in particular was when I was about 14, and I’d gotten a rather bad sunburn from a day at the beach. I was miserable from the discomfort, I was hot and I was itchy. My parents were relaxing on the couch and I walked into the room and began throwing a temper tantrum about how hot and itchy I was. The more I cried and stomped dramatically, the worse I felt. They both just looked at me like I was nuts, which only aggravated me further. I finally ended up taking a cool shower and slathering myself with aloe, which is what I should have done in the first place, minus the tantrum.

Over the course of my life I’ve learned what I can and can’t do, and I’ve learned how to prevent or treat some of the issues that arise when dealing with the heat. I don’t let ectodermal dysplasia keep me from doing the things I love. I just figure out how to make things work, and I know lots of others like me are doing the same thing.

 

A salute to summer vacation!

A salute to summer vacation!