Einstein Magazine Feature on Rett Syndrome

Families affected by Rett Syndrome know that one of the premiere clinics in the U.S., indeed in the world, is at the Albert Einstein College of Medicine in the Bronx, NY. Its full name is a mouthful—the Rett Syndrome Center of the Children’s Hospital at Montefiore—but its focus on providing state-of-the art services for Rett patients and their families is unparalleled and intensely focused.

Hundreds of families come to the Center every year so their daughters can meet Dr. Aleksandra “Sasha” Djukic and her team of neurologists and neuroscientists. Though Djukic never intended to specialize in Rett when she first joined the Einstein faculty in 2006, the breakthroughs in research over the past decade inspired her to establish the Center, which now serves more patients than any other Rett center in the country.

 

“Now that there was proof of principle that these children could get better, I felt an obligation to promote research and provide better care.”

 

The Albert Einstein College Magazine recently published a very compelling cover story about Rett Syndrome and the Center. Entitled “Solving Rett Syndrome,” the article describes Dr. Djukic’s cutting edge work in developing treatments for Rett and unlocking ways to communicate with affected girls and women. Neurologists long thought that girls with Rett had little cognitive ability. But Dr. Djukic, backed up by the intuition of so many parents, felt otherwise. As she says in the article, “Their eyes told a different story.”

The Rett Syndrome Research Trust is proud to be a partner with Dr. Djukic and the Center. The Center, like RSRT, was born out of the optimism brought by scientific proof that Rett Syndrome can be reversed. Together, the two organizations have spearheaded research and clinical trials. Recently, Einstein hosted a Rett Symposium that featured RSRT’s Executive Director Monica Coenraads, Dr. Djukic, and Huda Zoghbi, M.D., of Baylor College of Medicine, who in 1999 discovered the genetic defect that causes Rett.