Proclamation for Rett Syndrome Awareness Month (October 2024)

Whereas Rett Syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the individual's life; and

Whereas Rett Syndrome occurs worldwide in 1 of every 10,000 female births and it is usually recognized in children between 6-18 months of age as they begin to miss developmental milestones or lose abilities they had once gained; and

Whereas throughout their lives, these courageous individuals will need total care and constant support from their family as they will combat many medical challenges including seizures, osteoporosis, scoliosis, breath holding, hyperventilation, nutritional problems, apraxia and the loss of speech; and

Whereas in 1999, it was discovered that Rett Syndrome is primarily caused by a sporadic mutation in the MECP2 gene on the X chromosome, and since this discovery there are many research projects taking place across Ontario and Canada; and

Whereas as there is no Canadian Rett Syndrome Association, the Ontario Rett Syndrome Association has members across Canada and through donations and fundraising efforts have been able to fund the Canadian Rett Syndrome Registry and over $678,000 in Canadian Rett syndrome research; and

Whereas Rett Syndrome clinics across the province provide direct critical support to the families and their loved one on care and management issues, including at the Children’s Hospital of Eastern Ontario (CHEO);

Now Therefore I, Lisa McGee, Mayor, do hereby proclaim October 2024 as Rett Syndrome Awareness Month in the Town of Arnprior and urge all citizens to make an effort this month to learn more about Rett Syndrome, fight stigma, light Canada purple and wear a purple ribbon to show support.

Lisa McGee, Mayor
Town of Arnprior