The Foundation for Nagar and Miller Syndromes, FNMS, holds a bi-annual conference so families affected by these two rare syndromes can get together and support each other.
FNMS Conference Changed My Life
The Boston 2017 conference was incredible! The weather was perfect and the view from the 21st floor was thrilling! Each time I attend a conference, I learn more about everyone. Honestly, until the New Orleans conference in 2015, I’m sorry to say I’ve been absently attending these conferences.
Life is hard and it takes A LOT of work just to show up, for all of us within the Foundation for Nager and Miller Syndrome!
We share this burden that is, often, too hard to even have the time to address. So, I apologize for not being able to help more, until now.
This most recent conference was an eye-opener–truly mind-blowing for many reasons! Let me try to recap my experience.
Overcoming Challenges Faced When Traveling
Traveling is a grueling endeavor for most people. It’s extremely challenging to try and scrape out enough value to do it at all, in my experience, but you and I are worth it!
Being able to tour historic cities in the USA, while meeting other rare humans, and their families is an exceptional gift. Thank you, DeDe, for working so hard to steer the ship.
My life was enriched by Boston’s iconic beauty and stature in history. The bus tour was fun! As usual, I wish I could have seen more, but I believe I was able to see what was important.The most profound moment of my trip wasn’t until the last night of the conference, after the dance.
Logan’s Syndrome Documentary Premieres Privately for FNMS
Earlier that day, many of the FNMS family joined me in watching my documentary, Logan’s Syndrome, for my first theater screening EVER. I was very scared to show my FNMS family what my life is like dealing with so many challenges as an adult. It was a cathartic experience for me to put it all out there. By viewing the movie, you’re ALL helping me get through the final, most difficult, psycho-physical obstacles.
This, in turn, allows me to be more present and helpful to other families within FNMS, and the world. So, I am proud to announce my film has just won “best documentary” at the Carmel International Film Festival!! It’s overwhelming but exciting… and more importantly, spreads the word about the foundation.
Later that evening, my mom, sister, and I arrived at the classic FNMS dinner/dance. The food was good, the music was loud, and I allowed myself to have a couple drinks.
Memories Bring Appreciation for Life
Watching Abi Concklin ride around on her tricycle took me back to my childhood and made me appreciate life. I was feeling like this conference had been the most successful, personally, than any before it. I truly felt my existence, as it correlated with the numerous families and the rest of the outside world.
There was a little after-party at the hotel restaurant where a few of us just hung out and talked until the bar closed. Mostly, I was talking to Bridget Ieronimo on the hard, wicker furniture. She and I had a “real” conversation in New Orleans 2015. It was the longest she and I have ever talked to each other until now.
Sharing Unforgettable Moments Together
Bridget saw my movie earlier that day and wanted to chat. She told me I had “a lot of guts.” I was thankful, but traditionally, compliments are hard for me to acknowledge.
It’s VERY, VERY hard for me to understand what someone is saying in a loud environment, let alone have a dialogue, so I was just staring at Bridget’s face so that I could understand as much as possible.
This is where another dimension of reality appeared!
Through watching her facial expressions and body language explicitly, I saw myself for the first time in my life, and this is a very embarrassing thing for me to admit; but this realization has changed my life, permanently. You must know!
I was judging myself for the way I looked. Even though I know better, I was STILL not getting past the physical. This goes for all other people with a condition like mine. I’m so sorry!!!
This is what has kept me content with “just showing up” all of these years. Because of my own disabilities including hearing loss, autism, and depression, I was literally unable to see what I was doing. I was so ashamed of myself!
We Are “Normal” People with Abnormal Bodies
Immediately, I was also filled with an overwhelming amount of pride and amazement! I thought,“Look at the two of us “normal” people with abnormal bodies. Just living our lives….”
We are rare. We have a voice and we and are positioned to challenge society, for the better. I am finally proud to be who I am, and look the way I do. It sucks BAD! Life is hard for everyone involved!
Speaking Truth Helps to Overcome Challenges
Together, if we are willing to speak the truth, it’s a beautiful way to live. Please talk with each other about anything you’re going through. I’m desperately trying to push myself to share as well! Thank you all! I can’t wait to see you in my hometown of Salt Lake City, Utah 2019!”