About Penny's Promise Fund
Penny’s Story
When Penny was just six months old, we knew something wasn’t right. She struggled to lift her head, to sit, to reach the little milestones most parents take for granted. We hoped she’d catch up, that she was just “a little delayed.” But appointment after appointment, test after test, the worry grew heavier.
Physiotherapy at Holland Bloorview showed that Penny’s muscles were weak, especially her core, explaining her struggles with balance and coordination. But no one could tell us why. Penny went through five years of extensive testing and countless medical appointments where the doctors said they had no answers. Finally, after full genomic sequencing, there came the day no parent forgets. We sat across from the doctors and watched their faces soften before they spoke the words that would change everything.
They told us Penny has an ultra-rare form of muscular dystrophy called SEPN1-related myopathy, a condition that slowly weakens the muscles, including those involved in breathing, over time.
There is no treatment. No cure.
And, they said gently, very little research.
In that moment, our world completely changed. We asked what her future would look like. The truth was, they didn’t really know.
That kind of uncertainty changes everything. It’s waking up each day with hope and fear woven together. It’s holding your child tighter because you don’t know what challenges they will face down the road. It’s learning how to manage complex care, such as nightly respiratory support, while trying to give her the most joyful, ordinary childhood possible.
Because Penny is joyful. She’s bright, curious, hilarious, and full of determination. She loves fiercely and she perseveres quietly, every single day.
But the reality is that because her disease is so rare, the only path to a cure lies with families like ours, families who refuse to accept “there’s nothing we can do.”
Through Penny’s Promise, we are funding the research that could one day lead to a treatment for SEPN-1. And we also know this work also adds to the knowledge base for many other related conditions such as other dystrophies, MS, aging, and more.
Hope isn’t abstract for us. It’s a choice, it’s love in action, and it’s what gets us up every morning.
Penny’s Promise Fund
From Adversity to a Promise
When life changed for Penny, we made a promise: to do everything in our power to fund the research that could one day give her, and others like her, a chance at a cure.
Founded by Laura and Chris, along with our extended family and community, the Penny’s Promise Fund hosted at The Toronto Foundation (a registered charity) is dedicated to advancing life-changing research for Selenon-related myopathy and sparking hope for families affected by all rare diseases.
We proudly support Dr. Alan Beggs and his team at Boston Children’s Hospital , the only group in North America developing genetic therapies and innovative treatments for Selenon, as well as a companion study at University College Cork in Ireland, where researchers are investigating how Selenon functions at the cellular level to guide new treatment approaches. Together, these global collaborations form a united front against one of the rarest muscle diseases in the world.
With a $5 million goal and over $250,000 already raised, every donation brings us closer to hiring more researchers, securing essential lab supplies, and accelerating breakthroughs that could change lives.
✨ Join us in transforming adversity into action and turning promise into progress.
Together, we can fund the discoveries that bring hope within reach.
Penny’s Dollar Cure Club
From Pennies to Progress
This is one of the easiest and most meaningful ways to help. By joining the Dollar Cure Club, you’re turning small, tax-deductible monthly donations into lasting medical impact, with very little burden on you, but enormous potential for change.
When you join, you become part of a growing community of hope. You’ll receive updates on the breakthroughs your dollars make possible, and as the fund grows, we plan to host exclusive donor events, giveaways, and behind-the-scenes access to the research your kindness fuels.
We have a dream that Penny's Dollar Cure Club will one day become a fund that supports research for other rare diseases and give more families the hope they deserve.
✨ Join Penny's Dollar Cure Club today.
Together, we’ll turn Pennies into Progress — and progress into cures.
