About
The mission of A Toast to Carly is to raise funds to both eventually find a cure for the disease while also helping those living with this debilitating disease. Myotonic dystrophy is a long term genetic disorder that affects muscle function. Symptoms include gradually worsening muscle loss and weakness. Muscles often contract and are unable to relax. Other symptoms may include cataracts, intellectual disability, and heart conduction problems. Myotonic dystrophy is an autosomal-dominant disorder which is typically inherited from a person's parents. The disorder generally worsens in each generation.
A Toast to Carly has set up an Endowment with the University of Rochester Medical Center to fund clinical care for patients suffering from myotonic dystrophy and to support the research team who is working hard to find a cure.
There currently is no cure.
Carly Spinetto
A Toast to Carly was started in memory of beloved daughter, Carly Spinetto. Carly was born with myotonic dystrophy, and while it dictated the path her all-too-short life took, it never dictated the enthusiasm with which she lived her life. Her smile and mischievous giggle will always be remembered by her family and anyone who had the pleasure to meet her.
Despite the numerous surgeries and challenges throughout her life she remained consistently positive, had the sweetest laugh, and gave the best hugs. Her enthusiasm for singing and listening to music was one we could all learn from, and she loved movies, especially Disney princess stories. She passed away in 2013 at the age of 23—March 20th is her birthday, and we routinely host events near this day in celebration of her life and brave fight.
These events are intended to raise awareness of myotonic dystrophy and to generate funding in our fight against myotonic dystrophy.
Contact
33 Torrington Lane
Bluffton, SC 29910