As young adults, brothers Babak and Daniel Darvish, born less than two years apart, were avid athletes, music lovers and medical students who planned to become surgeons. But about five years ago, they discovered that they shared something besides their hobbies and professional aspirations. Both were diagnosed with hereditary inclusion body myopathy (HIBM), a rare muscular disorder experienced by only about 500 individuals worldwide.
Babak first detected something amiss as a third-year medical student. "I was an avid guitar player … and realized I was having progressively more difficulty [playing]." Around the same time, Daniel, by then doing his medical residency, noticed he wasn’t running and bounding up the hospital steps as quickly as usual.
Putting their knowledge to work, the brothers searched the medical literature and finally discovered a few research papers that seemed to describe their condition. HIBM, they learned, typically strikes in the 20s or 30s, gradually weakens the muscles of the limbs and eventually leads to total disability. The disease predominantly affects Iranian Jews, who have a 5 percent to 10 percent chance of carrying the gene mutation responsible for HIBM. Still, even if both parents carry the gene, their children have a 75 percent chance of eluding the disease.
Once they realized what they were facing, the brothers traveled to Israel with blood samples in hand to meet with professor Zohar Argov and Dr. Stella Mitrani-Rosenbaum. The Israeli researchers were among the few scientists investigating this condition. (They subsequently identified the gene that causes HIBM last year.)
Babak and Daniel returned home determined to generate support for research on HIBM. The two spoke extensively at Hadassah events and other venues to raise funds and awareness within the Iranian community. They were among the few willing to put a face to a disease that many preferred to keep under wraps. At the same time, they began to contact and catalogue those who had HIBM, or seemed to exhibit symptoms. Their efforts generated visibility and financial support, but a research breakthrough remained elusive.
"The daunting limitations that threatened scientific progress became apparent," Babak noted. "There were not enough patients known to provide blood samples for research. There was inadequate awareness of the disease, and due to its small target population, little to no interest in the wider general and medical communities…. This was an orphan disease, in an orphan community."
Frustrated with the lack of progress toward a cure, the Darvish brothers decided to step up their own activities. In 1997, they joined with the Iranian Jewish Federation (IJF) to found Advancement of Research for Myopathies (ARM.), a nonprofit entity dedicated to raising funds and providing grants to promising research around the globe. ARM subsequently broke off from IJF. Photographer Mansour Pouretehad currently serves as ARM’s president and is also a major benefactor. In addition, last year the Darvishes created the HIBM Laboratory. Located in an Encino medical building, the lab collects and analyzes blood samples and acts as a clearinghouse for HIBM research. As Daniel explains, "Our goal is to get to clinical trials — and ultimately, treatment — as soon as possible."
Although Daniel said the laboratory performs "ancillary research," he and his colleagues have discovered four previously unknown genetic mutations that cause HIBM. Their findings were published in this month’s issue of the scientific publication Molecular Genetics and Metabolism.
Meanwhile, ARM, has awarded more than $270,000 in grants so far this year to researchers at UC San Diego, USC and Hadassah Hospital in Israel.
Living with HIBM derailed the Darvish brothers’ plans to become surgeons, but set them in new career directions. Babak, who is now married, works in physical medicine and rehabilitation at the West Los Angeles VA Medical Center. Daniel changed his specialty to internal medicine, and now devotes all his time to running the HIBM lab.
"We don’t know who is next," Babak said. "There are people in their teenage years that have no clue what’s in store for them…. People need to have a sense of urgency and feel that this [cause] belongs to our community and really work as a team toward finding a cure."
