The Morgellons Research Foundation, fighting on behalf of a possible skin and neurological disease still unrecognized by any public health organization, faced enough roadblocks before it started creating its own. Morgellons is characterized, those at the foundation say, by crawling sensations, strange fibers sprouting from skin lesions and, often, severe fatigue and mental haze.
But now, the only foundation representing roughly 5,000 self-diagnosed Morgellons registrants nationwide can be characterized by its own trait: infighting.
Two key members of the organization resigned last week, in part because they had yet to receive requested financial records from the foundation's executive director, Mary Leitao.
Ms. Leitao, formerly of McMurray, began the foundation some four years ago when she noticed symptoms in her youngest son. She named the disease, created a Web site and collected information about those complaining of similar symptoms. In June, Morgellons made its most significant wave: The U.S. Centers for Disease Control and Prevention announced it would begin an investigation into the phenomenon and form a task force to perform research. Most mainstream medical practitioners have said the disease is psychosomatic.
In conjunction with this development, the Morgellons Research Foundation has attracted attention, including a feature Wednesday on ABC's "Primetime." But Dr. Greg Smith, a Gainesville, Ga., pediatrician and one of the recently resigned board members, said Ms. Leitao lacked the vision to help the foundation grow.
"She was not effectively leading us forward," Dr. Smith said, noting her reluctance to add volunteers or create a "businesslike model" for growth. "I just don't want to throw stones, but Mary would react emotionally when people disagreed with her. ... We were having this adolescent drama acting out, and it felt very irrational."
The parties agree on this much: Two or three weeks ago, Dr. Smith and former Chairman Charles Holman asked Ms. Leitao for the foundation's financial records from 2004, the first year in which it had 501(c)3 status. Per Dr. Smith's story, Ms. Leitao said she didn't have the records. Per Ms. Leitao's story, she was going to give them the records, but didn't know it was "an emergency situation."
Either way, Mr. Holman faxed a letter Aug. 1 to the Internal Revenue Service, introducing himself as chairman when, in fact, he'd been replaced in that position by Dr. William Harvey. A donations-soliciting letter Dr. Smith had written and posted on a medical Web site was replaced by a retraction.
Dr. Smith, in his replacement letter, wrote that, without the financial records, he could not "in good faith ask anyone to contribute to the foundation."
"I don't think Mary has done anything illegal," Dr. Smith said. "But I have every right to see the records. That hint of secrecy, I couldn't live with it."
After the departures of Mr. Holman and Dr. Smith, the Morgellons Research Foundation restructured its board. In a statement released by Ken Cowles, the foundation's public relations official, the recent contention was painted as a power struggle. "[T]wo people within the Morgellons Research Foundation attempted to oust the executive director and take control of the organization," the statement read. It added that all IRS filings were finished and in the hands of the agency.
"It has been the most bizarre situation," Ms. Leitao said in an interview. "We're talking little, tiny chunks of money. I will tell you, the year 2004, there were $318 worth of donations. And $100 of those came from me. I donated a check to my own foundation to jump-start us."
The chief researcher involved with Morgellons, Dr. Randy Wymore, an Oklahoma State University assistant professor of pharmacology and physiology, decided to distance himself from the organization and its controversy. Though he still will research the disease and maintain a working relationship with the foundation, he has surrendered his title as director of research.
Chico Harlan can be reached at firstname.lastname@example.org or 412-263-1227.