Madison to Host First Blue Sky Girls Event at State Capitol

October 10, 2012

City of Madison Fire Chief Davis and Firefighters Particpate

MADISON, WI; 10 am, October 13, 2012 - Madison's Capitol will host Wisconsin's first year of participation in the international Blue Sky Girls event. Using the steps of the Capitol building closest to State Street, area families affected by Rett Syndrome will hold their ceremony. Participants and attendees are asked to wear purple, the official Rett Syndrome awareness color, to show their support. City of Madison firefighters (Local 311 Firefighters Union) have offered their services to help any of the girls that need assistance climbing to the top. If a girl or women is wheelchair-bound they will carry her, step by step, to the top. Madison Fire Department Chief Davis will be participating as well.

Blue Sky Girls, or girls with Rett Syndrome, around the world are hosting their second annual event to commemorate Rett Syndrome Awareness Month (October). A Rett Syndrome Awareness Month Proclamation for October was just recently signed by Wisconsin Governor Scott Walker. Climbing stairs is a symbolic gesture, because climbing takes you upward and forward, even when it is difficult. The majority of girls and women with Rett Syndrome, are, in fact, not able to walk or climb stairs unassisted. Twenty-four states and seven countries are participating in similar ceremonies simultaneously. In its second year, the event is gaining more publicity and even hosting keynote speakers to address their respective crowds. Media outlets are being contacted in almost all states in the hopes of sharing their message much further than the local participants.

Co-Coordinators Kelly Schoeller and Heather Cooper are both mothers of girls living with Rett Syndrome.

"I believe stair climbing is even more symbolic for our girls than simply rising to the top when others may not expect them to be able to. I think it is a reminder of what many people take for granted: just being able to walk up a flight of stairs," says Schoeller.

Rett Syndrome is a unique developmental disorder that is first recognized in infancy and seen almost exclusively in girls, but can be rarely seen in boys. Rett Syndrome is the most physically disabling of disorders affecting girls. Every day, 20 girls are born with Rett Syndrome.

Cooper shares, "When you live in the rare disorder world, days like today remind you that you are not alone and that we still have a lot of educating to do to make the public more aware of our girls' physical disabilities. We have to teach the public about their cognitive abilities and their determination to overcome."

Schoeller adds, "Yes, we would like to remind people that inability to speak does not equate to inability to understand."

About Rett Syndrome
The disease was first described 45 years ago. In 1999 mutations in a gene called MECP2 (methyl-CpG-binding protein 2) were identified as the cause of Rett Syndrome. Only 8 years after identification of its genetic nature, scientists have proven that symptoms can be fully reversed even in adult experimental animals. The MeCP2 gene regulates the activity of a host of other genes crucial to normal development of the brain.
Symptoms include:
• Loss of speech and motor control
• Functional hand use replaced by compulsive hand movements
• Disordered breathing
• Severe digestive problems
• Orthopedic abnormalities including scoliosis and fragile bones
• Disrupted sleep patterns
• Extreme anxiety
• Seizures
• Impaired cardiac and circulatory functions
• Parkinsonian tremors
Most girls live into adulthood. They spend life in silence, unable to speak but alert and aware. Strong eye gaze is their most important means of communicating with the world. Strategies and devices that can allow girls with Rett Syndrome to meet their most fundamental human need - to communicate - are available but much underutilized.
The prevalence of Rett Syndrome is equal to that of Cystic Fibrosis, Huntington's and ALS.
To become an Event Sponsor for Blue Sky Girls, please contact Dr. Sasha Djukic rett@montefiore.org.
Or visit this website: http://www.blueskygirlsrett.com/

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Contact:
  • Kelly Schoeller, 920-988-5459
  • Heather Cooper, 608-695-1800