When Alessio Fasano, MD, began his research career in the late 1980s, he was passionate about finding a cure for cholera, a devastating diarrheal disease of children in developing countries. Several decades later, the director of the Center for Celiac Research and Treatment at MassGeneral Hospital for Children (MGHfC) is just as passionate about finding answers to the origins of disease, even though his early career discoveries have taken him down a very different path.
Born in Salerno, Italy, birthplace of the world’s first Western medical school, Dr. Fasano is something of a medical Renaissance man himself. At MGHfC, his current roles include (along with leadership of the Center) chief of the Division of Pediatric Gastroenterology and Nutrition, director of the Mucosal Immunology and Biology Research Center (MIBRC), vice chair of Basic, Translational and Clinic Research. Dr. Fasano is also a visiting professor at Harvard Medical School.
Dr. Fasano leads a team of four doctors, a nurse practitioner and a registered dietitian at the Center, which offers state-of-the-art research, clinical expertise and teaching for the diagnosis, treatment and prevention of gluten-related disorders, including celiac disease, wheat allergy and gluten sensitivity. Founded by Dr. Fasano in 1996 at the University of Maryland School of Medicine, the Center has developed diagnostic and research breakthroughs in the area of celiac disease and other autoimmune disorders.
Expanding the Spectrum of Care and Research
“Coming to Mass General is like a dream come true,” says Dr. Fasano. “Becoming part of an institution with the world’s top academic medical researchers—and the largest hospital-based research budget in the U.S.—opens up so many opportunities for collaboration and learning.” Along with MGH President Peter Slavin, MD, Ronald Kleinman, MD, physician-in-chief at MGHfC, was instrumental in bringing Dr. Fasano and his team to MGH. “Having Dr. Fasano and his team of researchers and clinicians brings an added dimension of care to our celiac disease patients at Mass General,” says Dr. Kleinman.
The Center also has spearheaded efforts to improve the quality of life for people with celiac disease, gluten sensitivity and other gluten-related disorders through an active role in advocacy for gluten-free labeling and other initiatives with celiac community organizations and others. In January 2013, the Center began a new chapter with the move of its clinical and research team to Massachusetts General Hospital in Boston. As part of the MIBRC, the Center is housed under MGHfC, but Dr. Fasano and his team of celiac experts treat patients of all ages at their clinic on the 6th floor of the Yawkey Center for Outpatient Care at 55 Fruit Street.
“Dr. Fasano is proactive like no other doctor I know. He cares about the patient’s mental as well as physical health.”
One of those patients is Sharone Jelden, who was diagnosed with celiac disease three years ago. The 45-year-old mother of three was worried about her children. “A few years after I was diagnosed with celiac disease, my youngest daughter was also diagnosed. I expressed concern about my other two kids and told Dr. Fasano that no doctor was willing to order genetic tests because, although it might give me some peace of mind, it wouldn’t provide any definite answers,” says Jelden. “Dr. Fasano understood that peace of mind has a value as well, and he immediately ordered the tests.”
She adds, “Dr. Fasano is proactive like no other doctor I know. He cares about the patient’s mental as well as physical health. And this attitude trickles down to all those I’ve encountered at the Center for Celiac Research and Treatment at Mass General.”
Building Support for Celiac Center
Along with treating patients at the Center and overseeing research work in two labs, Dr. Fasano mentors medical fellows and research scientists and leads a team of 18 pediatric gastroenterologists. He also finds time to write and raise funds to support the Center’s clinical and research efforts. In early May he authored the book “Gluten Freedom,” published by Wiley Health for general readers to help dispel current confusion about the gluten-free diet as a fad. Proceeds from the book support the work of the Center.
Since its founding in 1996, the Center has been supported by generous donations from private individuals, celiac community organizations and industry sponsors. Director of Development Pam King recalls the many grassroots donors who supported the long-term research effort that led to 2003 study that put celiac disease on the map in the U.S.
“We had donations from wealthy individuals and donations from children who gave their allowance to support their siblings—and everything in between,” says King. “The ongoing support we have from so many celiac support groups and the celiac community in general is what makes our work possible.”
Looking for “American Celiacs”
“I had no idea that the Center’s early work would ultimately become so pivotal to the awareness and increased diagnosis of celiac disease in the United States.”
Dr. Fasano’s enduring passion is finding out the causes and mechanisms of celiac disease, an autoimmune disorder triggered by eating products with gluten, which is found in wheat, rye and barley. When he arrived in the United States in the early 1990s, celiac disease was almost unheard of in his adopted country, even though it was a commonly recognized and treated condition in Italy.
“I came to the United States to get away from celiac disease,” jokes Dr. Fasano. “I had no idea that the Center’s early work would ultimately become so pivotal to the awareness and increased diagnosis of celiac disease in the United States.”
Intrigued by the complete absence of celiac disease patients at his Baltimore clinic, Dr. Fasano embarked on a study to determine the rate of celiac disease in the United States. It took more than five years, 13,145 blood samples and approximately $2 million to determine that one in 133 people in the United States suffer from the autoimmune disorder. This benchmark prevalence study, published in the Archives of Internal Medicine in 2003, still stands as the defining article on the rate of celiac disease in the United States.
As the world’s leading researcher into gluten-related disorders, Dr. Fasano is routinely consulted by other physicians, immunology experts and a host of scientific and general media reporters and editors. “We average about three to four media inquiries every week, with diverse readership ranging from ELLE and Parents magazine to National Public Radio to The Wall Street Journal and The New York Times,” says Susie Flaherty, director of communications for the Center. “Dr. Fasano is very generous about sharing his expertise to help address the current confusion and concern about eliminating gluten from your diet.”
Finding Future Directions
“We’re looking to exciting collaborations and great discoveries in our new home.”
In 2000, through a serendipitous series of events, Dr. Fasano and his team discovered zonulin, a protein that regulates intestinal permeability. Increased intestinal permeability, or “leaky gut,” can allow unwelcome invaders, such as the gliadin from gluten, to cross the intestinal barrier and activate a destructive immune response. Along with celiac disease, increased intestinal permeability has been associated with other autoimmune disorders, including type 1 diabetes, inflammatory bowel disease and multiple sclerosis.
In the 2000s, Dr. Fasano and his team developed a therapeutic to target zonulin called Larazotide acetate, which has been successfully tested by Alba Therapeutics. The Baltimore-based company is now pursuing Phase III clinical trials for the drug, which is on the fast track for approval by the FDA.
While Dr. Fasano doesn’t think a drug can replace the gluten-free diet, a different therapeutic treatment would be very welcome to patients with celiac disease and other gluten-related disorders. “Having an integrative treatment to the gluten-free diet would be of tremendous benefit to our patients in keeping them safe in risky environments, such as restaurants or traveling,” says Dr. Fasano.
In other research developments, Dr. Fasano’s lab has undertaken an international, collaborative effort to uncover the composition and changes in organisms in the gut to help determine why only some individuals with an inherited predisposition to celiac disease develop clinical disease. His clinical research team is currently recruiting infants and mothers-to-be to participate in the long-term, longitudinal study.
Pursuing an Ambitious Agenda
His lab also is investigating the role of the timing of gluten introduction to infants in the development of celiac disease and working to uncover a biomarker and develop a diagnostic tool for gluten sensitivity. In collaboration with other researchers, the Center is also pursuing possible links between gluten-related disorders and conditions such as schizophrenia and autism spectrum disorder in certain subgroups of patients.
Dr. Fasano has an ambitious agenda in his determined quest to improve life for people with celiac disease and other gluten-related disorders. He is the first to acknowledge that ongoing support from the Center’s longtime and loyal supporters, along with funds from new friends and sources, is critical to the success of the Center in both research and clinical advances.
“Thank you to everyone who has given so generously in the past, and who is considering a gift in the near future,” he says. “We’re looking to exciting collaborations and great discoveries in our new home.”
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