Moebius syndrome Conference 2014. Amazing, amazing.

So, this past weekend (July 18-20) I attended my third Moebius syndrome Conference. I would have to say that it was probably the best one yet. It was in Bethesda, Maryland which isn’t too far from Washington D.C. We did a couple tours of D.C, and it is an amazing city.

A quick rundown of some of the events:

Our flights to Washington were not smooth. We missed our connection in Toronto because of the incompetence of Air Canada. We were then stuck in Toronto for 6 hours, as our next flight was also delayed. It was a nightmare but we finally made it to the conference hotel at about 1 A.M.

On Friday morning, we went to the hotel restaurant for a buffet breakfast. It was actually really good. I could not wait to get to the conference area so that I could see my Moebius family, as I call them. When I walked into the conference vicinity, I immediately had people coming up to me and saying “hi Kelsey!” I immediately felt at home. I registered, said hi to more people and then went to see the keynote speaker and the opening of the conference.

The keynote speaker was a man from England named James Partridge. When he was young, he had been in a car fire and had severe burns to his face. He went through a ton of reconstructive surgery after that. As someone with a facial difference, he saw the prejudice and stigmatism attached, so he started a foundation called Changing Faces. Based in the UK, it is a support group for those with facial differences. Please check it out- It is really an amazing organization and I am hoping to be able to become involved with it somehow.

After the session was done, I went to say hi to Rick Guidotti. I met Rick at the last conference in 2012 and he is one of the most amazing, beautiful people that I have ever met. He used to be a fashion photographer who photographed for Elle, GQ, Vogue, etc etc. He worked in Milan and Paris and all of those beautiful people. One day, he ran into someone with Albinism. He was so intrigued that he went to medical textbooks to get more information. The images that he saw were so sad and sensationalized that he knew that there was something he could do. He started Positive Exposure which is an organization that brings awareness to genetic/physical differences. He goes around the world to different conferences photographing those with differences and he brings education to schools, medical experts, researchers, etc. Rick is honestly who I aspire to be. He is incredible. I ran into him so many times over the weekend and he always had a hug for me. He photographed me, and some of my friends wit Moebius and he just has that ability to make you feel beautiful. I cannot say enough about how much of a gorgeous person he is, and I beg all of you reading this to PLEASE check out his work and what he does with Positive Exposure. Rick, you’re amazing and you’re changing the world for the better.

I attended sessions on various subjects that apply to people with Moebius syndrome. I went to a Just for Adults with Moebius session, where we talked about things that we go through. The thing about these conferences is that I feel at home. I feel safe, I feel like I can just be myself. It’s kind of like, a bubble. We’re all together, away from the feelings of the outside world. I didn’t feel like everyone was staring at me, I didn’t feel like everyone was wondering what was wrong with me. I was in a place with people who know exactly what I go through. They know. As much as I love my friends and family in the “real world”, they don’t fully understand the burdens that come with living with a rare condition. How could they possibly? I know that they try and don’t get me wrong, I know that they sympathize and empathize. I know that they care, but people with Moebius can relate to absolutely everything. It is an amazing feeling. When I was at the sessions, listening to people talk about their challenges and struggles, I just found myself nodding my head in agreement. We’re such a close knit family and community and I am blessed to know such beautiful, outstanding, inspiring people.

To my Moebius family, you are everything to me. You mean more than you know, I love and miss you more than words can possibly say. The past 5 days were the best ones that I have had in a long, long time. I miss you all dearly. Am I the only one struggling to come to terms with being back in the real world? It’s really hard. You are all beautiful people. Never forget that. I hope that this weekend meant as much to you all as it did to me. Just because we’re apart now though doesn’t mean you’re alone. You’re never alone. We’re a family and we’ll always be there for each other.

So now it is back to real life, back to reality. One thing was reaffirmed for me this weekend though. A fire has been lit inside me to really throw myself into figuring out a way to raise awareness of Moebius. Rick and James really inspired me. I want to be like them, I want to create something that will help change the world. As Rick said, “Change how you see, See how you change.”

Moebius family, you’re always in my heart and on my mind.


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