Life On The Road with ALS

ALS Advocacy One Mile at a Time

Lights, Camera… Advocacy!

We set off Wednesday 12 June towards Austin TX. Why? Meg and I are co-hosting a very intimate screening of For Love And Life: No Ordinary Campaign. We settled for the night at a Harvest Host, a church parking lot, for an overnight stay [harvesthost.com]. After Meg freshened up we headed to the Violet Crown Theater. We quickly found perfect parking right by the theater! While Meg situated her self, after unloading me, she directed me to find the entrance. I proceed to look and I can’t find it. I report back to her and suggested taking the elevator down one floor to the main entrance. We proceed with this plan and to our surprise we encounter another elevator. Guess what! Had I turned right where I had originally looked, I would have noticed the elevator and the entrance to the right, around a wall! WTH, a second floor entry. Meg just looked at me with that look all husbands know too well, the one that says “you’re useless, but I still love you.”

Needless to say, we got there and they were ready to start the film, I shared a few brief words and… lights, camera, Action!

Afterwards, we stayed for a brief period to chat and thank those that attended the screening, that is until we were politely asked to exit the theater in order to prep for the next show.

It turned out to be a nice intimate event. If you haven’t seen the film it is now streaming on Prime Video. I am extremely proud and humbled to have been included in this powerful testament to creating hope, where little hope previously existed. Three years ago I received a call from Chris Burke to ask if I would be interested in participating in a small project he was working on. I gladly said yes, and he scheduled a time to visit. When he did, he had his son with him. They quickly set up lights, and coached me on what was expected of me. After about an hour of filming and interviewing we said our goodbyes, and that was that. Fast forward about a year and a half, and No Ordinary Campaign was born!

What a whirlwind it has been. Meg and I first got to see the film in a pre-release community link. It was still in post production, so we knew it was not the final product. Needless to say, we were blown away by the beautiful creation Chris had produced. Now two years after the film festival circuit it is now streaming globally, for the world to see first hand the impact a scrappy couple with a crazy idea have accomplished!

They have brought hope to a once hopeless community. Mobilizing a dying army into a force of change not seen in years. Thanks Brian, Sandra, Chris and the countless volunteers who have worked so hard to create this new hope. Lastly I would like to acknowledge the amazing staff of I Am ALS [iamals.org].

TJO

One response to “Lights, Camera… Advocacy!”

  1. My husband and I watched the documentary and it was so wonderful to see you Juan in it!

    All of it such a great testament to the human spirit.

    It inspired me to do more as I learn to live well daily with ALS.

    Like

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