Debbie Jorde Logo
  • Home
  • About
    • Our Website
    • Debbie Jorde
    • Heather Madsen
    • Logan Madsen
    • FAQ’s
  • Book
  • Speaking
    • Hear Us Speak
    • Speaking Videos
  • Media
    • In The Media
    • Media Kit
  • PAGES
    • Debbie’s Blog
    • News and Announcements
    • VLOG: Mom and Son, Debbie and Logan
    • Heather’s Blog
    • “Logan’s Syndrome” Documentary
    • Logan’s Art
    • Exercise with Debbie Videos
  • Contact

Awesome Life-Changing Experience to Last a Lifetime at FNMS Conference

29-Jul-2017 by Logan Madsen Leave a Comment

  • Share
  • Tweet
  • +1
  • Share
  • Pin It
  • Buffer
  • Stumble
  • Reddit
  • 0

Awesome Life-Changing Experience to Last a Lifetime, by Logan Madsen

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

Logan Madsen Having a Life-Changing Experience at the FNMS Boston ConferenceThe 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

Heather and Logan Madsen Overcoming Challenges During TravelingTraveling 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

LOGAN'S SYNDROME Wins Best Documentary in Carmel. Logan Madsen on the Famous Red CarpetEarlier 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

Abi Concklin Having Fun at the FNMS Conference in Boston.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 Foundation for Nager and Miller Syndrome Conference . Bridget Ieronimo, Sherman Perry, Jack Van Quillhard 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!

Overcoming Self-Judgment

Foundation for Nager and Miller Syndrome Conference, Logan MadsenI 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

Logan Madsen has an Awesome Life-Changing Experience at FNMS ConferenceImmediately, 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!”

sharing-caring-hearts1

  • Share
  • Tweet
  • +1
  • Share
  • Pin It
  • Buffer
  • Stumble
  • Reddit
  • 0

Free GiftAs a SPECIAL THANK YOU GIFT to our first 500 subscribers, we are giving away the first 3 chapters of the audiobook version of Eight Fingers and Eight Toes

FREE AUDIOBOOK DOWNLOAD

Filed Under: Debbie's Blog Tagged With: Foundation for Nager and Miller Syndrom, Logan's Syndrome Documentary

What do you think? We want to hear from you!

You must be logged in to post a comment.

  • Email
  • Facebook
  • Instagram
  • LinkedIn
  • RSS
  • Twitter
  • YouTube
SO GLAD YOU FOUND ME!

Debbie Jorde, Author, Inspirational Speaker, Media Kit Headshot LEARN MORE ABOUT DEBBIE

Buy the Book
FREE AUDIO DOWNLOAD

Like Us and Connect with Us on Facebook

Facebook
Tweets by debbiejorde
Subscribe to debbie Jorde's Youtube Channel

Logan's Syndrome Documentary

Logan Madsen Fine Art
Return To Top
  • Contact Us
  • Terms and Conditions
  • Privacy
  • Cookies
  • Affiliate Disclosure
All Rights Reserved 2009-2025 Debbie Jorde
Metamorphic Internet Marketing