Who is Agile Earl?
I’m Dan. FSHD battler. Stubbornly optimistic.
When I was diagnosed in 1999 with FSHD Muscular Dystrophy, I lived for playing footy and cricket. Loved a dance and going to see bands. Now, chronic pain, fatigue, stairs, sand and slopes are my sworn enemies, and a wheelchair is on the horizon. That is just the physical side. Isolation, anxiety, and fear are part of the gig too.
FSHD doesn't define me, but it's got a huge influence on 99% of my life.
That is FSHD: Relentless, heartbreaking, and unpredictable.
What is FSHD? It's rough... FSHD Muscular Dystrophy is a genetic disorder where muscles waste away over time, starting with your face, shoulders, and arms, and more often than not, spreading down through your back, hips, legs and so on. Infantile FSHD comes hard for little ones, others do not know they have it for years, but for most of us, it shows up in our teens.
Agile Earl is my way of not being a bystander and letting FSHD have it's way with me... and maybe my kid in the future. It's fighting back, building a community, and pushing towards a cure.
What is Agile Earl?
Agile Earl was born from the frustration, hope, and fight that come with living with FSHD Muscular Dystrophy.
A graphic designer by trade, I wanted to contribute to the fight in a way that was fun and hopeful. I wanted to give other FSHers a way not only contribute, but be seen, heard and recognised.
Agile Earl exists to raise awareness and fund critical research for a cure, using bold, purpose-driven streetwear as our weapon of choice. Our apparel is about standing strong, telling our story, and contributing to the fight against this cruel disease.
Every dollar of profit goes directly to FSHD Global to support cutting-edge research into treatments and, one day, a cure. Wearing Agile Earl is a way for sufferers, friends, and families around the world to unite, to feel part of something bigger, and to show that we are stronger together.
FSHD is ruthless, no doubt... but if you're like me and hate feeling helpless, then this is your chance to fight back. Wear your strength, share the message, and help change the future.
What's with all the oranges?
FSHD Muscular Dystrophy can severely impair someone's ability to smile. So, every year on June 20th our community, family and friends acknowledge World FSHD Day by encouraging people to pop an orange slice in the mouth to symbolise a smile for those who can't.
Feel free to email us a photo of you with your orange slice mouthguard and we'll happily share everyone's support on our socials - agileearl4fshd[at]gmail.com
Where did the name come from?
About 20 years ago, I went to a gig to watch a mate fill in on drums for a band he knew. He rolled up with just his sticks and had to use the house kit... a beat-to-hell old set of drums that belonged to the venue.
The lights came up, my mate cracked his sticks together and off they went. But something on the kit's kick drum caught my eye. It appeared to be a Pearl drum kit, but the P had worn off. To the left of the weathered logo there was a battered FRAGILE sticker, but the FR had peeled away. You had to use a little imagination, but it clearly said to me, "Agile Earl."
I immediately connected with this bloody kick-drum. I felt it's pain. Once strong, now a bit beat-up. Still standing, still playing. I thought, "Yeah, me too, mate. Me too."
The name stuck with me all these years, and I knew that I would use that name for something cool one day... and here we are.
The irony wasn't lost on me then and it's definitely not lost on me now. I used to be agile, now I'm fragile.
I am Agile Earl.