What... (i.e. camp, dance class, birthday party)
        
 
Pick a NYMetroParents Region: All Regions   Manhattan    Brooklyn    Queens    Westchester    Rockland   Fairfield    Nassau    Suffolk  

Resources

   

REACH FOR THE SKY

     Home  >  Articles  > Local News - Manhattan
by NYMetroParents Staff

Related: raising awareness for rett syndrome, rett syndrome resources in manhattan, rett syndrome support in manhttan, blue sky girls raises rett syndrome awareness,


Blue Sky Girls raises awareness for Rett Syndrome, a severe neurological disorder on the autism spectrum, with families affected by the genetic disease on the steps of Tweed Building in Lower Manhattan.

On Oct. 13, more than 60 local families gathered on the steps of the Tweed Building in Lower Manhattan to participate in the second annual Blue Sky Girls event and raise awareness for Rett Syndrome, a severe neurological disorder on the autism spectrum. The participants, along with 50 New York City firefighters, supported young girls with Rett syndrome as they climbed the steps of the courthouse, a symbolic act that represented the girls’ will to keep going, even through the difficulties they face each day.

Blue Sky Girls at Tweet Building in Manhattan
Courtesy Montefiore Medical Center

Rett syndrome, which affects approximately 16,000 girls in the U.S., is a neurological disorder that leads to development reversals, especially in speech, hand use, and, in most cases, walking. The disorder is caused by a genetic mutation and often leaves girls aware and alert without the ability to express themselves in any way.

"Our research has shown that these girls are 'locked' in their bodies. They are aware and alert but have difficulty communicating and so their intelligence and abilities are underestimated," says Aleksandra Djukic, M.D., Ph.D., director of the Tri-State Rett Syndrome Center at The Children’s Hospital at Montefiore. "It is our moral obligation to increase public awareness of the burden of isolation these children face due to their inability to communicate. The core of our philosophy is that, like any other individual, children with handicaps have their weaknesses, but their strengths too."

While Rett syndrome affects one in 10,000 girls, many people are unaware of the condition. The Blue Sky Girls event was held during Rett Syndrome Awareness Month, and the Manhattan participants were joined by families in 24 states across the U.S. and various countries around the world, all of whom gathered to show that, despite severe motor impairments, girls with Rett syndrome can reach the top with the help of community and family support.

 

Also read:


Get Your FREE Indoor Activity eGuide!

More Local News - Manhattan Articles

Social Learning Center Offers Alternative to Day Care
Jen Rudin Casting Offers Kids Improv and Audition Workshops
Manhattan Fourth-Grader Wins $10,000 to Make Over Her School's Cafeteria
French-English School Relocates Preschool, Expands Middle School
American Israeli Preschool Offers Drama, Dance, Soccer

Be a good fellow parent and share this with a friend who would be interested
Email Friend

Local Local News - Manhattan Sponsors

Art Parties
917-952-1015
...

Perfectly Prepped
[email protected], 631-901-7278
Welcome! Perfectly Prepped offers personalized one...

Asphalt Green
Upper East Side, 555 E. 90th St
NY
212-369-8890
...

City Treehouse
129A W. 20th St (bet. 6th & 7th Avenues)
New York, NY
212-255-2050
...

Active Kidz Long Island
200 Robbins Lane
Jericho, NY
516- 621-6600
Active Kidz is the place for kids to get healthy w...
See Our Local News - Manhattan Directory

local zones

Nassau

Nassau cont.

Suffolk

Suffolk cont.

Westchester

Westchester cont.

Fairfield

Rockland

Rockland cont.

Queens

Queens cont.

Brooklyn

Brooklyn cont.

Manhattan

Copyright 2014 NY Metro Parents Magazine Site Design: THE VOICE