Welcome
Turning adversity into purpose and promise.
Penny's Promise unites families, researchers, and advocates to conquer SEPN-1. Join our movement of hope!
About Penny's Promise Fund
Our Story
Laura and Chris noticed something amiss with Penny when she was just six months old - she struggled with basic movements like holding her head up and sitting. Physiotherapy at Holland Bloorview revealed weak core muscles and hypotonia, which explained her challenges with balance and mobility. Despite these obstacles, Penny is a bright and tenacious child, always eager to explore and learn.
However, after extensive testing, it was revealed that she has an ultra-rare form of Muscular Dystrophy called SEPN1-related myopathy, a degenerative condition with no known cure. Managing Penny's condition involves complex medical interventions, including respiratory support at night. This condition is progressive. Due to the rarity of her disease, research and funding are limited, meaning that any hope for a cure lies with funding from families like Chris and Laura.
Our Promise and Purpose
From adversity comes purpose. The Penny's Promise Fund was founded by Laura, Chris, and our extended family to honor our promise to Penny—to fund life-changing research for SELENON syndrome and spark hope for all affected by rare diseases. We support Dr. Beggs’ team at Boston Children’s Hospital—the only group in North America dedicated to developing genetic therapies and innovative treatments—as well as other research efforts across several sites worldwide. With a $5 million goal and $200,000 already raised, every donation brings us closer to hiring researchers, securing essential supplies, and discovering breakthroughs that transform our promise into a future free from this debilitating condition. Join us at https://torontofoundation.ca/pennys-promise-fund to help create hope and turn adversity into purpose.
Support Penny's Promise Fund
Help us make a difference in the world. Your donation can change lives.
What is SEPN-1
The SELENON (formally SEPN1) Related Myopathies (SELENON-RM) are a group of rare progressive congenital myopathies which alter an individual’s ability to synthesize Selenoprotein. Clinical symptoms of SELENON-RM may resemble other congenital muscular dystrophies (CMD), especially those involving spine rigidity.