Two local authors have teamed up to help a local family struggling with a devastating disease.
Authors Joyce Faulkner and Pat McGrath Avery helped organize a book signing and social at a recent fundraiser for the family of Len and Rosemary Spampinato, who own Papa Gallo Cucina in Collier Town Square.
The Spampinatos’ identical twin boys, Dante and Roman, have x-linked myotubular myopathy, a muscular disorder. Dante died in March 2013.
Local writers gathered at the Spampinatos’ restaurant on May 29 on Washington Pike and donated a percentage of sales to the Joshua Frase Foundation, whose mission is to support families and find a cure for the disease.
“I come here for breakfast every day, whenever I’m in town. When their child passed away last year, I was horrified. To have identical twin boys and you lose one and they both have the same disease,” Faulkner said.
“More important, really, than us selling a single book, is to get the word out.”
Rosemary said the Joshua Frase Foundation has experienced “tremendous success” with clinical trials and is raising funds for human trials. Success would result in gene therapy to treat the disease.
X-linked myotubular myopathy mostly affects males, and those who have it experience problems with walking, speaking, eating and eye movements, she said.
They are unable to cough, so if they get a cold or a respiratory infection, it is difficult to clear their throats and run the risk of developing pneumonia.
Roman, 8, receives breathing treatments to keep his airway clear.
“He can communicate, he uses gesturing and sign language. He has a way of getting his needs met. He loves the iPad and loves trains and playing games,” Rosemary said.
“The disease is rare but the potential for a cure is so good that to get people to care about it is the challenge.
“This is a group of local, community people who have huge hearts. It makes a huge difference.”
Faulkner and Avery’s latest book, “Fun Days in Pittsburgh” — spotlighting places to see and things to do around town — is dedicated to Dante.
Author Ramona Roush, of Rochester, took part in the event, selling copies of her first young adult novel.
She said her own family has endured tragedies and felt compelled to help raise money for the foundation.
“It’s really hard when you have a family situation and see so much suffering going on. Any time I can help out with a charity, I’m willing to do that.”
Rosemary was overwhelmed by the support for her family and others affected by the disease.
“It gives me faith in people, despite everything that’s happening in the world today,” she said.
“When push comes to shove, people really have huge hearts.”
David Mayernik Jr. is a staff writer for Trib Total Media. He can be reached at [email protected].