A father's marathon
Dad driven by determination to help find cure for daughter's blood disease
Posted by the Asbury Park Press on 10/8/06
BY ELEANOR O'SULLIVAN
STAFF WRITER
Much of Frank Somma's adult life has revolved around his most significant turning point of all: the birth of a child.
Somma's daughter Alicia, now 21, was born with a genetic blood disease that is fatal: thalassemia, or Cooley's Anemia. Alicia is the younger daughter of Somma and his wife, Deborah, of Holmdel. They also have another daughter, Christine, 25. The Somma family has taken this devastating reality and worked for many years to raise money to help find a cure for the disease, by way of alerting government officials and the public of its pernicious toll. Frank Somma has worked with the nonprofit Cooley's Anemia Foundation for 20 years, seven of them as its national president.
On Nov. 5, he will run the New York City Marathon to raise money to help find a cure for the disease.
"What am I doing to train? Running like crazy!" Somma said at the Middletown Diner on Route 35 last week.
"I'm a trained body builder, so running does not come naturally to me. I only started jogging a couple of years ago to keep in shape."
In training for the marathon, Somma runs near his Holmdel home, at Geraldine L. Thompson Park, or rises early, commutes to his job in New York, as vice president of sales for Toshiba/Candle Business Systems of New York and New Jersey, and runs in Central Park before arriving at his desk. He planned to log 30 miles last week. His goal is to raise $20,000 from the race.
"What made me want to run the marathon? I don't know — lunacy?" Somma said.
More likely, a passion for the cause of finding a cure for the disease that has afflicted his daughter since her birth. According to the Cooley's Anemia Web site, the life expectancy for those suffering from the disease is short — most die in their teens; some survive past 20, even into their 40s, but those numbers are small.
In that regard, Alicia has joined him in giving speeches at conventions and fundraising gatherings.
"They get along very well as father and daughter, and she has grown in her capacity of going on the bandwagon lecturing about Cooley's Anemia," said Joseph Sciame, national president from 2003 to 2005 of The Order Sons of Italy in America, a group which does much of its charitable fundraising for the Cooley's Anemia Foundation. "There is nothing so moving as a younger person talking about what they are going through. The two of them as a team have been quite remarkable," Sciame said.
Sciame, vice president of community relations at St. John's University in New York, said he met Somma about 15 years ago, and has been impressed with his commitment to the cause of finding a cure for the disease.
"He's been a real partner in working with our organization to help raise funds," Sciame said.
Somma, 48, is running in the marathon as a member of the 200-plus-strong Team Continuum, a group of cancer survivors and medical professionals devoted to raising money for research into finding a cure for cancer. Somma will donate a portion of his share raised to the Cooley's Anemia Foundation.
At marathon's end, in Central Park, where Somma has been training, he said he expects to see Alicia waiting for him somewhere in the crowd.
Somma said Alicia requires daily drug therapy, inserted by needle into either a leg or her stomach, and blood transfusions every two weeks. He said his daughter is waiting for a new by-mouth pill form of her daily medication to stand the test of time on the market — say, three years — before taking the risk of switching from the successful needle-inserted therapy.
Even with treatment, Cooley's Anemia sufferers can develop liver and heart failure, diabetes and osteoporosis, and blood-borne diseases. Somma said there are fewer than 1,000 recorded cases in the United States of thalassemia, but in Iran (26,000); China (100,000) and India (tens of thousands), the disease is much more prevalent.
For the past three years, Somma and Alicia have been working with medical professionals and advisers to stir Congress into earmarking money for work on developing a cure. And Alicia has been pursuing a life filled with work and future goals.
"She's at Brookdale (Community College, Middletown) and she would like to teach theater," Somma said. "She has a great singing voice, and she has great and varied taste in music. We go to the theater — Alicia enjoys the musicals — in New York."
As for Frank Somma's goals, besides finishing the marathon next month — the course begins on Staten Island, where he grew up — he would like President Bush to lend the weight of his office to initiating a campaign to find a cure for thalassemia.
"I think I could help him leave a tremendous legacy," Somma said.
He pointed out that curing one single-cell disease such as thalassemia could open the door to curing others, such as Tay-Sachs, Sickle Cell, hemophilia and aplastia. A campaign is under way by Somma and others to raise about $4 million to attract researchers' commitments, which, they predict, would attract more money.
"It's one thing to raise money as a foundation or as an individual, but the government is where the money is," Somma said.
Somma also is the author of "Weekly Thought: Fifty-Two Lessons for Exceptional Living" (iUniverse, $15.95, paper). It grew out of telephone messages left him by inspirational speaker and sports psychologist at Montclair State, Rob Gilbert.
Somma plans to do a similar book for 2007.