|L-R: Lou Lombardi, Pat McGrath Avery, John Faulkner, Joyce Faulkner, Rosemary Spampinato, JoAnne Quinn-Smith, Ramona Roush, Len Spampinato|
Guests enjoyed good food, music and company as well as the chance to meet area authors. The authors donated a portion of book sales to the foundation. In addition to the authors in the above photo, Jim Greenwald and Anna Marie Gire attended.
JoAnne Quinn-Smith, Red Engine Press and Papa Gallo coordinated and sponsored the event. We appreciate all who helped make the evening a success.
Rosemary Spampinato, wife of Papa Gallo (Chef Len Spampinato) spoke about the disease and the challenges in finding and testing a cure.
"I believe we are within two years of having a cure," she told the audience. "I hope it is in time for my son or at least for the many others who suffer from myotubular myopathy."
The Joshua Frase Foundation (www.joshuafrase.org) is an organization dedicated to finding a cure for myotubular myopathy. The Spampinatos' twin sons were born with congenital myotubular myopathy. One son, Dante, died last year at the age of seven. The couple prays for a cure in time to save their son, Roman.
Clinical trials have progressed through large animals and now an additional $500,000 to $1,000,000 is needed to begin human trials. The foundation is working hard to raise the money.
Donations will be greatly appreciated.