Hi! Welcome to our new blog. We are an organization driven by a single desire: to change the world for the better.

Change, in general, is scary - isn’t it? Change is hard. It’s unmarked territory. Sometimes, when you’re the only one changing, it can be very lonely. I don’t know about you - but there have been times in my life that I’ve approached change like a stubborn mule - digging my heels in and demanding my life stay exactly the same. Occasionally, that works. Oftentimes, it doesn’t.

At some point though, we find ourselves at staring at our circumstances and we have a choice: we can let this make us, or we can let this break us. That is the sweet spot. That’s when change happens. It happens when we take the hand we’re dealt and we shuffle the cards. When we open our eyes to see past what is and look at what can be… and then we go for it. Or, a speaker I recently heard said, “When life hands you lemons, you make pomegranate juice.”

The kind of change that adds beauty and hope to the world around us isn’t easy to come by. It requires effort, dedication, patience, perseverance, courage, hope, and flexibility. It requires the ability to remain unwavering in the face of criticism, ridicule, and despair. To bring change and hope to the world requires that we trust our gut instinct when we have no logical reason to walk the path that we’re walking. It requires that we get comfortable being uncomfortable.

Change always happens outside our comfort zone.

Naturally, this dream of ours didn’t just happen overnight. It happened as a result of years of hard labor. Our founder, Alison Frase, is the mother of a son with severe special needs. Her son, Joshua, was born with a rare neuromuscular disorder called Myotubular Myopathy. At the time of his birth, there were only 50 known cases worldwide. Alison and her husband Paul decided that they would start a foundation, The Joshua Frase Foundation, with the intention of raising money to fund research. Today, they have raised over $6 million dollars, founded the first dog colony for MTM research, and as a result, the first trial drug was recently administered to a baby with MTM. Joshua was Alison’s “one”, he was the reason she fought for change. There is hope for this rare disease community now because one person decided to advocate for her son. Her journey brought her to a researcher, who connected her with another researcher, who connected her with parents, who connected her with… you get the point. Systemic change never happens alone… but somebody has to start the ball rolling. We call these people “agents of change”.

Our intention is to use this space as a place to highlight men and women in our community and around the world who are agents of change. We’ll be bringing you stories about people who affect the masses, and others who affect those around them - but everybody shares the common desire to change their world for the better.

Change starts with one person. One act of kindness. One refusal to accept status quo. One push in the right direction.

Change starts with you.

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by Evelien Van Londersele

Looking forward to read the inspirational stories. Learning about Alisons story sparked the fire,when faced with our newborns diagnosis. Her endeavours and persistent mindset motivated us to stand up for our son even more. A parents love and the resilience to change adversity into positivity is a mighty weapon indeed.