Tag Archives: NFED

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.

Toastmasters Ice Breaker Speech


I mentioned a couple of whiles ago that I was going to join Toastmasters again. I’ve been going for about two months now and last Monday I did my first speech, which is known as The Ice Breaker. The objective of the speech is to introduce yourself to your audience and demonstrate what speaking skills you already have in 4-6 minutes. I actually already did the Ice Breaker speech at the previous Toastmasters club I was a part of, but I figured that I would just start at the very beginning with this new group. Of course I wrote a new speech too because the other one didn’t seem fitting anymore. Anyway, here is the text of my speech. I’ll have to record it next time!

Uniquely Fortunate

One of the first things people will say when a child is born healthy is “she’s perfect with all 10 fingers and toes.”  As you may have noticed, that descriptor was left off my birth announcement, as I was born with a rare condition called Ectrodactyly-Ectodermal Dysplasia Clefting Syndrome, or EEC for short. The most obvious symptoms of this condition at the time of my birth were my complete bilateral cleft lip and palate and my missing fingers and toes. Being born this way meant that I had some hurdles to clear in my early life and certain issues, both physical and emotional will stay with me for the rest of my life. But I didn’t let that get me down. Instead, I view my circumstances as uniquely fortunate.

I was fortunate to have been born near Philadelphia because that meant that I had access to skilled doctors and quality medical care to treat the various issues related to my syndrome. I was fortunate that my family was loving and accepting of me and that my parents never told me there was anything I couldn’t do. I was allowed to behave as any other child, and despite having a lot of surgery and medical treatments, I think my childhood was normal.

Let’s divert from EEC for a bit and talk about some of my interests. There are two things that I have always been passionate about and consider to be important aspects of what makes me ME. First I have always loved to create. Whether it is drawing, sculpting, writing or telling stories, I love the feeling of energy that flows through me when I am in the creative zone. I was fortunate to have a natural talent for art and never thought that my hands would hold me back from that. The second thing I have always held dear is a love and appreciation for nature. I was fortunate to have parents who valued this too, and as a child I got to spend time exploring in the woods, watching sunsets on the beaches of Cape Cod, observing the stars on summer nights and learning from everything I saw. Even now I can spend hours just wandering around outside, looking at plants or insects and being awed by what I see.

When it came time to decide what I wanted to do with my life, I had some difficulty settling on any one thing. For a short while I had the idea that I would write and illustrate children’s books for a living. This was mostly based on a fantasy I had of living in an old farmhouse with a massive art studio in the attic, and apparently a very wealthy husband to support my artistic endeavors. Unfortunately there was no such husband in the picture and I knew I needed to find a more reliable way to earn a living. It took me a few years of wandering before I figured out a career that would allow me to combine my passion for creating and my love for nature – Landscape Architecture.  Before you envision me walking around a property with a weedwacker, let me clarify. Landscape Architecture is the art of designing beautiful, functional and meaningful outdoor spaces. LA requires a vast knowledge of history, art, architecture, psychology, botany and design. It is not the same as landscaping, which is what the guys with lawnmowers do. I enrolled in the LA program at UCONN and threw myself into it wholeheartedly. I was really psyched to finally have found my niche and be able to combine so many of my interests in one profession. When I graduated with a BSLA in 2008, I was ready to hit the ground running. Unfortunately, this was at the same time as the 2008 stock market crash, and suddenly, not one LA firm was hiring. Fortunately, I had a lot of clerical skills and I was able to find work in the corporate world.  Fast forward several years and I am now working right down the road from here at an additives manufacturing company, which is just a fancy way of saying a chemical plant. I work in the marketing department and while it’s not landscape architecture, it does allow me to flex my creative muscles a bit and it often pushes me out of my comfort zone.

I’d always felt like EEC was only a small part of who I was, but after graduating and while being underemployed, I entered a period of self-reflection. I decided to look up an organization I’d known since childhood – The NFED. NFED stands for National Foundation for Ectodermal Dysplasias and it is an organization for people like myself who are affected by various forms of ectodermal dysplasias.  I joined the organization with the idea that I could be an inspiration to others, but what really happened is that I met a lot of kids who really inspired me. Comparing stories with the children and other affected adults led me to realize just how much EEC has affected me. As I’ve gotten older I have l learned to cherish how unique EEC makes me, and thanks to the support I felt from my NFED friends, I even started a blog about my life with EEC. Being open about my syndrome has made me feel better about who I am, and it makes it easier for me to talk about my issues without feeling uncomfortable. Blogging also offers me a challenging outlet for my creativity.

I hope that by being involved in Toastmasters I can refine my speaking skills and become more comfortable in front of an audience. I would like to use my talents and my experience to become a motivational speaker someday, or maybe an educator of some kind. I would like to share my fortune and pay it forward to help others as many have helped me.