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October is Rett Syndrome Awareness Month

On Saturday, October 21, two Needham women along with their families participated in the 7th Annual Blue Sky Day sponsored by the Rett Syndrome Association of Massachusetts. Jessica Goldman and Erika Gladstone, both 38 years old, were diagnosed with Rett syndrome as children. Rett syndrome is a lifelong neurological disorder caused by random mutations on the MECP2 gene on the X chromosome. Rett syndrome occurs in approximately 1 in 10,000 female births and is much rarer in males. Rett affects every aspect of life: communication, learning, movement, hand use, eating and even breathing.

Eighteen families from Massachusetts and beyond gathered in front of Gordon Hall at Harvard Medical School and cheered as the family members, with the assistance of active duty sailors from the USS Constitution, helped each child and adult with Rett syndrome ascend the staircase. Some were carried, some walked with assistance, but going up the steps is symbolic of moving forward and upward in spite of the difficulties each child and family faces due to Rett syndrome. The families were joined by friends and supporters along with staff from the Boston Children's Hospital Rett Syndrome Program.

It was a beautiful, sunny day for Blue Sky Day and proclamations were read from Governor Baker and Mayor Walsh declaring October to be Rett Syndrome Awareness Month in Massachusetts and in Boston. There were clowns on hand from Hearts and Noses Hospital Clown Troupe as everyone enjoyed lunch together at the Harvard Medical research laboratory of Dr. Michela Fagiolini, one of the many researchers worldwide engaged in Rett syndrome research. It is the dream of every family that one day soon this research will lead to treatments and hopefully a cure for this disorder.

To learn more about Rett syndrome, visit Rettsyndromemass.org.

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