Insight From Professional Liability Practice Leader Raffi Kodikian Into Rett Syndrome

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Finding a cure for Rett Syndrome is on the horizon, says Raffi

The quest to find cures for diseases can be more difficult when there are relatively low numbers of people afflicted by them each year. That’s understandable since researchers need to allocate resources where they can do the most good for the most people. However, as Raffi Kodikian points out, science must continue apace to find treatments and methods to prevent and treat diseases regardless of how rare they might be.

Kodikian is a Vice President and Lawyers Professional Liability Practice Leader at Founders Professional, based out of San Francisco, California. He has a vested interest in finding a cure for Rett Syndrome, a neurological disorder that mostly affects females. That’s because Kodikian’s niece has this affliction.
Raffi Kodikian’s career in the insurance industry started in 2004, where he began as an office manager and administrative assistant in San Francisco, eventually rising in the ranks to become an assistant broker.

Now his focus is on open-brokerage products and program business for attorneys throughout the Golden State. Around the office, Raffi Kodikian is known to bring the same passion and drive to his legal work as he does to urge support for research leading to a cure for Rett Syndrome.

Facts About Rett Syndrome

Rett Syndrome almost always strikes girls, such as the niece of Raffi Kodikian. Scientists characterize Rett Syndrome as a condition where girls initially experience a period of normal growth and development as their peers. But then, development slows down.

When his niece was diagnosed, Raffi Kodikian was dismayed to learn that Rett Syndrome affects about 1 in 10,000 children, striking mostly females because the genetic mutation causing Rett Syndrome is on the X chromosome. Males have an X and Y chromosome but girls have two X chromosomes, making them more vulnerable.

Girls with Rett Syndrome lose the ability to use their hands with purpose or make distinctive hand gestures, according to the National Institute of Neurological Orders and Stroke. Then they experience a slowing in the growth of their head and brain. Eventually, patients wind up with an intellectual disability, suffer from seizures, and have a difficult time walking.

A physician named Andreas Rett identified the syndrome in 1966, but it took until 1983 for it to become recognized across the medical community when Dr. Bengt Hagberg of Sweden wrote an article about the syndrome.

Rett Syndrome in most cases is due to a genetic mutation that causes the body to produce abnormal forms of a protein that’s needed for proper development.

Raffi Kodikian Applauds New Work Towards a Cure for Rett Syndrome

Given the severe nature of this disease, Raffi Kodikian supports the work of the Rett Syndrome Research Trust, which was founded in 2008 to promote research leading to a cure.

To that end, it has launched an initiative called CURE 360. The focus is “on six approaches that attack the disorder at its genetic core: gene replacement, gene editing, MECP2 reactivation, RNA editing, RNA trans-splicing, and protein replacement.”

Raffi Kodikian joins countless families around the world who have loved ones dealing with this disease to voice their support to fund research into the malady.