WHEREAS, Rett Syndrome is a genetic neurological disorder that occurs almost exclusively in females. Every 2 hours a girl is born with Rett syndrome, but its symptoms usually do not appear until 6 to 18 months of age; and,
WHEREAS, a regression period leads to lifelong impairments with multiple dysfunctions: speech is lost, seizures can develop and scoliosis occurs. Many develop irregular breathing patterns and more than half of the girls and women lose their ability to walk. The hallmark sign of Rett Syndrome is near constant repetitive hand movements while awake; and,
WHEREAS, those diagnosed with Rett Syndrome require maximum assistance with daily living activities; and,
WHEREAS, the disorder is not degenerative and biomedical research is proving that neurological symptoms could possibly be reversed even after decades of severe symptoms; and,
WHEREAS, with the discovery of the gene that causes Rett Syndrome (1999), research in the lab that proves the theory of reversibility of the disease (2007), the discovery of breakthrough testing models (2010) and the launch of multiple disease-modifying human clinical trials (present), we now reach an unprecedented and historic moment in time where we must do everything possible to fund the truly life-changing research in front of us; and,
WHEREAS, IRSF is the world’s largest private source of funds for Rett Syndrome research, addressing the full spectrum of this developmental disorder while advocating to improve the quality of life for the patients and their families; and,
WHEREAS, we must continue our efforts in bringing awareness to the medical community, therapists, teachers, caregivers, and the general public as well. We must have funding available for researchers who are dedicated to finding a cure for Rett Syndrome;
NOW THEREFORE, I, Rick Snyder, governor of Michigan, do hereby proclaim October 2016 as Rett Syndrome Awareness Month in Michigan.