2017 NFED Family Conference Recap

The 2017 NFED Family Conference has already come and gone – in a flash, it seems. This year it was held in Falls Church, VA, which is right outside of our nation’s capital – Washington DC. The day before conference was Advocacy Day, and many NFED families went to Capitol Hill to speak with their state representatives about mandating that dental treatment be covered under health insurance.

I won’t recap every second of the conference – just point out some of the highlights.

Highlight 1: Reuniting with old friends!

Now that I’ve been going to conferences for 6 years straight (except for last year, which I skipped), it’s crazy cool how many people I actually know! Of course there’s my adult EEC crew, Norma’s Canadian entourage, my mini-me – Ally, and her family, and all the other adult parents of EEC kids (most of whom are not much older than me).

There’s also a lot of youngsters who I met when they were just little tykes, and who are now getting so big! Julie, who once cried when I tried to hold her, now sought me out to say hello! I reunited with my two Sams, although I only have a picture of one of them. The boys I met at my first conference are all teens now and towering over me.

Of course the are plenty of other adults I enjoy reuniting with – I don’t want to try and list everyone here for fear of missing anyone. But you know who you are!

Highlight 2: Meeting new friends!

I was excited to discover a mother/daughter team from Connecticut at the conference. Not only that, but the daughter has EEC! Doubly exciting, since we hardly ever get New Englanders, much less Nutmeggers at the conferences. I will definitely be getting in touch with them so we can get together locally.

Another new EEC person was 9-month old EJ, who was there with his mom Iris. Iris introduced herself to us by announcing that she had Facebook stalked all of us. If she hadn’t been a mom of a young affected boy, this might have been super creepy, but we all laughed and then fought over who would get to hold EJ next.

I’ll let the photos do the rest of the talking – and let me say a quick shout-out to Iris, Caitlin, Terri and Suzanne for sending me most of these pics. I think only about 4 of them were mine to begin with. And thank you Bridget for the picture of Sam and I. 🙂

After the conference was the Rally for Ally. I had hoped to get to chat with a lot of people there who I hadn’t gotten the chance to talk to at the conference. However, about halfway through, it started torrentially downpouring, and I ended up heading back to the hotel with the MacDonald clan. We got dinner in the hotel restaurant and then it was time for me to catch my plane!

Next year the conference is going to be in Oregon! I’m already trying to figure out how much time I can get off from work so that I can make an extended trip out of it.

Hello from Houston!

Here I am in another hotel, in another city, on another work trip.

That reminds me of an Ani Difranco song…

in a coffee shop in a city
which is every coffee shop
in every city
on a day which is every day

The night before I left, I must have been subconsciously worrying that I wouldn’t wake up in time for my flight the next morning. I went to bed around 10:30, and fell asleep really quickly and soundly. I woke up and saw that there was light coming in from the hall, and I thought that it must be morning already. But Dave wasn’t in bed with me. So I checked the clock and it was 11:30pm! I kind of laughed at myself and rolled over to go back to sleep. Then I woke up again at 12:30. Then 1:30. And so on, until my 4:30 alarm. I mean, come on! Even Dave was like “Why are you awake right now?” when he came in to bed at 1:30. It was ridiculous.

So then, on the plane the next day I was trying to listen to an audiobook but I kept dozing off. My head would flop to the side or roll forward. At one point I even hit my head on the wall of the airplane because I sort of flopped over. Which I guess was better than flopping onto the passenger next to me.

It’s interesting being in Houston and seeing all the trees that are nice and lush and green, and lots of flowers blooming. It’s humid and warm, although it’s been overcast and rainy. Not that it really matters, as I’ve barely left the hotel.

Did you know Asian flight attendants dress like this? I guess their suits aren’t that odd, but the little hair bows and scarves add some flair you don’t usually see.

Last night I did get to leave the hotel and go out to dinner with Susan Hamm, a fellow NFED family member and all-around cool person. When I was planning my trip to Houston I realized that there were quite a lot of NFED people in this town. I knew Susan wasn’t far from my hotel (Houston is huge), so I contacted her to see if she could meet up for dinner, and she said yes!

She took me to a place called Pappasitos, which is Tex Mex food. When the manager found out I was from Connecticut, he gave us free dessert! It was great to spend time with Susan, who I have only ever talked to a few times at family conferences and during NFED liaison calls, but I’d had a feeling she was a kindred spirit. And I was right.

We talked about a lot of things, but one of the things that we talked about was the idea that you can always find someone who’s got it worse than you do. Or maybe it’s better phrased as, “everyone’s got something.”

She talked about how when her son Zach was born she was worried about his condition (he has EEC too), but when she saw what some of the other babies in the hospital were facing, she realized that it could have been worse. I told her about the time when I had my bone graft surgery and the girl in the hospital bed next to me had been born with half a face, and had gone through WAY more surgeries than I had. Of course I did not appreciate her struggle at the time. (I was 11). I was actually kind of pissed that she had it worse than me because I was used to playing the “special kid” card. It’s true- I played that card for all it was worth.

Last night’s Zentangle

Today I was thinking about it more, and that the “worse” isn’t always a direct comparison. It doesn’t  mean that you can always find someone else with the same thing you have, but worse. It may just be that from your perspective that they have it worse than you do in some way. For example,  I’ve had friends who have come from emotionally or physically abusive family situations, and to me that always sounded worse than the cards I had been dealt. I’ve never felt unsafe or unloved in my home, and it’s really sad to me that there are people out there who can’t say that about their own families. But who knows, maybe those same people look at me and feel glad that they haven’t had to endure all the surgeries I’ve been through. Maybe they prefer their messed up home life when it comes down to it?

I think sometimes people get so caught up in their own issues. It’s so easy to feel sorry for yourself if you don’t stop to notice what others are facing. If you just step out and look around, you’ll see that everyone is dealing with some kind of issue. It might not be as obvious as facial scars or birth defects, but, it is painful to them nonetheless.

I’m not saying it’s as simple as noticing that other people struggle too. Obviously it takes more effort, but I think noticing and becoming aware is the first step. I have to remind myself of that sometimes too.

Ok. Off to Zentangle before bed. I have an early flight tomorrow!

Peace / Love / Compassion

Going to give these gel pens a workout.





Home Again

It always feels good to come home. Mom and I bade farewell to Colorado yesterday. We left the resort at 6:30 in the morning and drove to the Denver airport. The sun was in my eyes the whole way and I was irritable but I managed to get us there in one piece. 

We were able to board early enough to get a window seat this time (well, I got the window). What kind of a jerk makes their mother sit in the middle seat? Me.

The Denver Airport from the runway.


Rocky Mountain High


A midwestern state, don’t ask which one.


We took off into a cloudless sky. I was able to take a lot of cool pictures and enjoy the scenery for a long time. The flight passed without incident. Once again, they warned us that there would be turbulence but there was none. When we got to Hartford, Dave was waiting for us. He looked especially handsome. 

Mom and I parted ways, but I will get to see her again by the end of the week since we are camping together. After we got home; Dave, Dad and I went to dinner at our local favorite, Señor Panchos. I regaled them with tales of exploring Colorado and of my friends from the NFED. Both of them were tired from refinishing floors earlier in the day so they probably wished I would just be quiet. 

Today was back to the grind. I was thrilled to learn that my co-worker who had given her two weeks’ notice the week before I went to Colorado had decided she wouldn’t leave after all. I had been trying not to think of it during my vacation but was rather stressed at the idea of having to take on more work or train someone new. So that was a relief. 

It was a bit hard to concentrate at work today, because my head was full of mountains and clouds and thoughts of my friends and all the conversations we had last week. Of course I am glad to be home with my man and my feline children, but a part of me is sad that I won’t see most of those people for another year or more. 

I’m thinking I might have to take at least one road trip to visit those who are within a few hours drive. But for now I will enjoy being home. Perhaps my next project will be to redo my gardens.  

My gardens are out of control.



Colorado Trip, Day 8 (!!)- NFED Conference, Day 3: The Finale

Today started off with a photo shoot. Everyone from the conference was instructed to stand on the bridge that connects two buildings. We were all wearing our family conference t-shirts, with the exception of a rebellious few. Keep an eye on the NFED Facebook page for those pictures.

After breakfast, Terri and I wo-manned the promo items table. We also got called in to do some quick interviews on video. Yeah baby! (Though I wish I’d done something more attractive with my hair.) I talked about how blogging about EEC has given me more confidence and self-acceptance. 

Promotional table selfie


After lunch we said goodbye to Suzanne and Will and some other families who were leaving. Boo.  


Bye bye Bracee!

Terri and I went to Lindsay’s Skin and Hair session and learned a bit about how to apply makeup and which skin care products would work best for us. Then we had a regional meeting, where we discussed the things we could do to improve communications in our local areas. Then suddenly it was time for the children to sing a song and the conference was officially concluded. 

Wedding crashers.


This evening the remaining EEC peeps went to dinner at a local Indian restaurant. We enjoyed the food and were soon uncomfortably full. We went back and hung out on the patio again until it was time for bed. Mom and I have plans to leave at 6 tomorrow to return our rental car and catch our flight home.  

Goodnight, Colorado!


I have a lot of deeper thoughts about the conference that I do intend to share on the blog, but I don’t feel quite prepared at the moment. It’s hard sometimes to find the words to express the feeling of being with people who share something so rare as our condition. We are fortunate to have found each other through the NFED, and I love being able to get together once a year and just spend time together. 

I loved being in Colorado. What a gorgeous location. I joked last night that I kept taking pictures of the same mountain that’s behind the resort, but as any nature-lover will agree, the time of day and the angle of the sun and the level of cloudiness all affect the way the landscape looks. I just love it. 

The only disadvantage of the conference being in this location (the resort) is that it felt like we were all spread around. I feel like I missed the chance to run into people and strike up conversation. I did get to meet a few new people, but it didn’t seem like as much as previous years. 

While I am sad to say goodbye to my NFED friends, I am looking forward to returning home to my handsome David and my two fuzzball children. I just remembered that we have a sales meeting during the upcoming work week. Oh work, I have barely considered you once this whole week. 

Next weekend is our Grand Isle camping trip. I will NOT be blogging nightly about that, as I intend to be fully unplugged. I will say that this nightly blogging experience has been interesting and may have helped me become a little less anal about creating perfect blog posts. 

Those of you reading this who were at the conference, travel safe! If I did not talk to you, I apologize. It’s probably because I just did not see you (or hear you). I hope to see you all (ya’ll) next time!





 Colorado Trip, Day 7 – NFED Conference, Day 2

I’m running out of steam on this one blog post a day business! I didn’t take many pictures today. 


Suzanne sent me this photo from a hike she took this morning.

This morning we had a motivational speaker who was interesting. He actually has a child with a rare disease too (though not ectodermal dysplasia). He had some people get up and share their experiences which was interesting. 

My ‘Adult Life 101’ session went well. I got there early and had everything set up all nice. The group was not as large as I had hoped, but we were still able to have a decent little discussion. We really could have used more time though. 

After that it was off to a lunch meeting to discuss the NFED blog. We brainstormed some ideas for the next couple of months. Once again time ran out. It seems like time is flying here!

The afternoon was the syndrome specific session, where we get to meet with other affected people and doctors to discuss various topics. 

Tonight was the talent show, which was a dinner show this year. For some reason our servers were really angry and kept slamming our plates down. I guess they didn’t like the entertainment. 

We then hung out on the patio for many hours. In fact, right now I’m actually writing this from one of the patio areas while my fellow EEC gang talk about how we can better serve older people with EEC. I’m listening!

The view from the patio… many hours ago.

In other news, back east, my friends the Claire family spent the day in Boston having little Ronan’s first cleft lip and palate evaluation. They will have to make many trips down in the coming years. It will be a hard row to hoe, but they are an amazing family and will power through. Dennis keeps using a hashtag which I will have to steal- #eecstrong

Definitely gonna make up some T-shirts. 

In conclusion. Here’s a selfie of the group I’m with right now. 

Tomorrow is the last day! Suzanne and Will will be leaving. So sad!  

Colorado Trip, Day 6 – NFED Conference, Day 1

Once again, I woke up bright and early. I guess I really am an east coast girl. Or perhaps I would just be a morning person if I lived here.

Today was the official start of the NFED conference, even though I felt like it started on Tuesday evening when a bunch of us were together for the dinner.

Registration didn’t begin until 10, so we had a leisurely breakfast and goofed around a bit in the morning. The majority of the following images were blatantly stolen from Terri or Suzanne or one of their husbands. I’ve got this beautiful iPhone 6+ that I keep forgetting to use.

Some of the EEC Chicks

Recreating our pose from last year, minus one.

The liaison group, of which I am a proud member, did an intro session at the beginning of the conference. We sung a slightly modified version of “Ain’t no Mountain high enough.” Thanks to Will for capturing this on video for all time. I can’t get it to post on here, so maybe later. We then introduced ourselves and did a little icebreaker activity. Major props to Kristin Kelso for organizing this.

After this, a group of us went out to Garbanzo for lunch. It was delicious and fun to be out and about with the gang. We then ran back to the resort to catch the Family Panel Discussion, which was really good.

I then had to rush out because I signed up to do a facial recognition study, which consisted of being photographed with a 3D imaging camera. This is what it looked like:

The camera(s) for the facial recognition study.

There was a full-color photo, and then this cool topographic view, which I liked better because it makes me look like a Roman goddess. Sort of.

I make a pretty cool looking sculpture.

After dinner, which was a surprisingly delicious veggie wellington, (as opposed to a steak wellington), it was time for the beach party!

We all traipsed down about 1,000′ in elevation to the lake, where children swam and people of all ages kayaked and rode stand up paddle boards. I got to chat with my Ally girl for a bit (photo to come, once I steal it from her mother).

Mountainous beach party.

I also made the rounds and chatted with some other people, but for the most part sat with my usual crew and drank wine. Not too much, of course.

Mom and Marc showing off their flash-endurance skills.

I can’t even with this flash.

EEC chicks and… dudes.

We then returned and hung out chatting with the videographers who are here making some documentary about some of the people at the conference. I’m not one of them, but I guess this blog is my own personal documentary.

I just realized how late it is… I must get to sleep! Tomorrow is a motivational speaker, which I am looking forward to hearing (so I can learn from him and become a motivational speaker myself someday.  Then, I am leading the young adult session.


Colorado Trip, Day 5 – Biopsy and Stuff

One of the reasons we came out to Colorado a bit early was because I volunteered to participate in a research study for EEC and AEC. 

It was really a minor sacrifice- I would let them take a small piece of my skin and they would grow it in a lab and study it.  The goal would be to learn more about the syndromes and potentially find a treatment for some of the skin issues people with AEC and EEC face. 

Waves of nausea.


Of course it wasn’t a big deal but I wasn’t exactly thrilled to have to visit a medical facility while on vacation. 

There is something about the cold, sterile medical environment that triggers a cold, hard fear in my psyche. Even though I knew it was just a quick biopsy, it’s still just not a fun place to be. 

Fortunately the whole process was pretty quick and I was able to get on and enjoy the day. Plus, it was pretty fun to hang out with my EEC pals in the waiting room and compare wounds afterward. 

After a very warm walk back to the hotel, Mom and I were off to the science museum. Woo hoo! We saw such delights as the Owl butterfly and display after display of gorgeous minerals and gemstones mined right here in Colorado. I didn’t take many pictures (I’m not even sure if you’re allowed to take pictures), but here are a few highlights. 

The owl butterfly. It would also make a great mask for your next costume party.


I’ve got this gorgeous hunk of fire opal. Let me carve it into a snail.


Worst Nightmare


Denver, as seen from the science museum


We also saw a show in the planetarium, which was fun. As we were leaving, we caught a glimpse of Dog the Bounty Hunter walking into the museum. Weird!

This evening we got down to the resort where we will be staying for the rest of the week. Some of us went out for a delicious pizza dinner.  

EEC Peeps

Tonight we tried to hang out a bit at the resort, but after various issues with room arrangements and the general tiredness of one and all, it was decided we would return to our rooms and slumber. 

Tomorrow the NFED conference begins! 


Colorado Trip, Day 4 – Celestial Seasonings

Today we started off with a trip to Celestial Seasonings. It was not as fun as the Ben and Jerry’s tour, but perhaps that’s a given. It was nice though. Some of the interesting things I learned were: 1. Herbal tea is technically not tea if it doesn’t contains actual tea leaves. It’s an herbal infusion.  2. They have to store the peppermint (and other mints) and the white tea in separate rooms from all the other herbs and teas because the white tea would absorb all the other flavors, and the mints would contaminate everything else. We got to go in the mint room. The menthol was overpowering. It would be great place to go if you had a head cold!  3. Boulder, Colorado is Celestial Seasonings’ only packaging plant. 

Celestial Seasonings… on Sleepytime Drive

Driving to and from Celestial Seasonings, we noticed that the field around it was full of thistle.  Gorgeous!

View outside Celestial Seasonings!

Upon closer inspection, it was also full of prairie dogs. They did not want to participate in a photo shoot, but I am a jerk and took pictures of them anyway. 

Prairie dog!!


We then got lunch at a local deli which had some delicious vegan options. We decided to head to the University of Colorado and check out their planetarium. We didn’t really have time to see a show, so we just looked at their lobby display, which was a bit dull. 

We thought we’d check out their art gallery instead, but once we finally found it (in the rain, nonetheless), we discovered it was closed! So we decided to just cut our losses and head down to Aurora. 

After a rainy and traffic-laden commute, we finally made it to Aurora. We soon met up with other NFED families who will be participating in various research studies tomorrow. Tonight we all had dinner together and signed the consent forms for the biopsies tomorrow. 

But the best part was getting to see some of my NFED buddies, and my Ally girl! We said we are going to get matching buttcheek biopsies tomorrow. In reality, I will likely do upper arm, but we’ll see what happens… More on that tomorrow. 

Reunited with Ally!


Once we were back in the hotel, I had a few drinks with my EEC pals. I think the altitude may cause the alcohol to affect me more than usual. Two glasses of wine and I am three sheets to the wind. I can only hope that this blog post is not horribly misspelled and inappropriate. I guess I’ll find out when I read it in the morning.  For now, I am off to bed! 

NFED Regional Conference in White Plains, NY

Last Saturday I hopped in my (NEW!) car and zoomed down to White Plains. It was a lovely sunny morning, although it was close to 0° F. When I arrived in White Plains, I drove around the block about 5 times before figuring out where the hotel actually was. Way to skimp on signage, Cambria Suites. I reluctantly handed over my (NEW!) car to the valet and turned my attention to the day ahead.

I arrived bright and squirrely and bounded up to the hotel lobby, where I greeted the NFED staffers, Kelley and Lea, and got to work at the registration table. I was soon joined by a very sweet young lady named Cami who helped check people in as they arrived.

Five minutes later I saw my reflection in a mirror and noticed that the tag on my scarf was sticking up. Smooth.

I later saw my reflection in a mirror and noticed that the tag on my scarf was sticking up. Smooth.

Of course I was happy to meet a lot of folks I hadn’t met before, but there were two families coming that I was especially excited to meet.

One was a young couple who had recently found out that their unborn son is affected with EEC. Ultrasound technology for the win! The father, Dennis, had reached out to me via email just two weeks before, after having found my blog. (I’ll write more about that cool story in another post.) I encouraged them to take the trip down from Maine so they could experience the awesomeness of a family conference.

The other family that I was looking forward to seeing was a guy (Sean) with EEC who I had known about from his aunt (Sally), but I had yet to meet in person. A couple of years ago, Sally and I had gone out for coffee and ended up spending something like four hours sitting and talking about life with EEC. Her sister (Sean’s mother) had EEC, so Sally knew all about how it was for someone to grow up with EEC and all of the challenges she had faced. She had been trying to get Sean involved with the NFED, but he had been reluctant. Finally I was going to meet this guy and his girlfriend Sharon!

Back to the conference – the morning kicked off with a heartwarming intro by DeeDee Olsen. Then, Kelley and Lea introduced themselves and spoke about the staff and services the NFED offers. Then, Tessa Field from Edimer gave a talk about the research that Edimer has been doing for XLHED. I found this really interesting, as I have seen Tessa at the last several conferences and I was aware of the XLHED research and treatment progress, but I had never actually sat in on one of the lectures. Tessa is an excellent presenter. She’s able to explain genetics in a way that the average person can understand.

Suddenly it was time for lunch! I made a sandwich and plopped a scoop of what I thought was potato salad on my plate. Sean’s girlfriend Sharon was beside me as we ate and we talked a lot. At one point I put a forkful of the potato salad into my mouth and realized instantly that it was NOT potato salad, but chicken salad. Horrors! Sharon had just asked me a question and was looking directly at me as I desperately tried to decide what to do with the offending meat product in my mouth. I smiled and held up my finger to indicate that my mouth was full. As soon as she looked away I blurted the contents into my napkin. It did cross my mind to chew and swallow, but since I haven’t had meat in so long I was afraid it might cause digestive calamity and ain’t nobody got time for that.

Anyway, talking with Sean and Sharon was really cool. It’s always fun to meet another person with EEC and go through all the stuff that is “wrong” with you, and realize that it’s actually tied to EEC, and that other people with EEC have the same problems.

My newest friends, Sharon and Sean.

My newest friends, Sharon and Sean.

After lunch, Dr. Tim Wright gave an entertaining overview of dental treatment for kids with ectodermal dysplasias. The final presentation was by a doctor who explained genetic testing. It was a difficult talk to follow and unfortunately I think it may have left people even more confused about genetics than they were before. Afterwards, I tried to explain to the others at my table what autosomal dominance is, but I don’t know if I did any better.

That was it for the presentations, and we had some time before dinner to chat. I mostly talked to Sean and Sharon, but I also got to talk with some other people I hadn’t met previously, and catch up a bit with the “regulars”.  A lot of people left at that time, and by the time the pizza was set out for dinner, there were only two tables of people left.

I made sure to grab a slice of pizza that did not contain meat, and I made my way over to talk to Dennis, who I really hadn’t gotten a chance to talk to earlier in the day. By then he had made friends with lots of people, telling them the story of how he and Lindsay found out their son would have EEC. Everyone was really excited that they had found their way to the NFED so early, and I felt a tiny bit of pride that my blog may have been the beacon that helped them find their way.

By about 6pm, everyone was gone and I sat talking with Lea and Kelley for a bit, while a handsome waiter cleaned up around us. We reflected on the day and talked about how we were looking forward to the national conference in Colorado in July. We said goodbyes soon after that, and I headed down to retrieve my (NEW!) car from the valet.

As I waited for my car, I noticed that the valets were actually driving the cars in and out of elevators, and that the garage must have been a floor below us. As I watched, a car emerged from the elevator and scraped it’s side along the edge of the brick wall next to the elevator. My mouth fell open, and as the car drove closer I could see that the other side was equally scratched. I realized that it must have been one of the guys who worked there, but I was rather unnerved at his carelessness. My car finally emerged without any damage and I leapt in and got out of there before anything else could happen. Crazyness!

So in conclusion… if you happen to have a NFED Regional Conference in your area, I highly encourage you to attend (just avoid the valet parking option). It is a great opportunity to connect with more local people, and to find out how the NFED can help you (or perhaps, how you can help the NFED). I forgot to mention this earlier in the post, but they provide a childcare option so that your kids can play and meet other kids while you hang out with the adults.

It was great to connect with new people and to have the opportunity to see some of my longtime NFED peeps in the wintertime. Less than five months to go until the conference in Colorado! Woo!

Photo Credits: Lea and Kelley took the photos and I snagged them from the NFED Facebook Page.

Top 10* Most Common Ectodermal Dysplasias

Here’s a list of the 10 most common kinds of ectodermal dysplasias among people who are registered with the NFED. I find it interesting that the largest group is actually “type unknown”.

When I was growing up, I knew about the NFED and a little about ectodermal dysplasias. From what I saw in the newsletters that came in the mail, it seemed like everyone with ectodermal dysplasia had HED. I felt like I was the oddball with EEC. I knew there were others out there, but not many.

I empathize with those who do not have a clear diagnosis. It must be frustrating not really knowing what to expect, or whether a particular issue you’re having is related to ectodermal dysplasias or not. Even though I knew my diagnosis early on, we did not realize everything that was associated with it, because at the time, we only knew one other person who had it. Now, of course, I realize that just about every health issue I’ve had is related to my syndrome.

Anyway, on with the list!