WHEREAS, Rett syndrome is a rare postnatal genetic neurological disorder that occurs almost exclusively in females and rarely in males; and

WHEREAS, Every two hours a child is born with Rett syndrome, but a child’s symptoms usually do not appear until a child is 6 to 18 months of age; and

WHEREAS, A regression period follows where acquired motor skills are lost, leading to lifelong impairments, including loss of speech, seizures, scoliosis, and irregular breathing patterns. More than one-half of those affected 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 for their entire lives; and

WHEREAS, The disorder is not degenerative and biomedical research on mice suggests that neurological symptoms may be reversed even after decades of severe symptoms; and

WHEREAS, With the discovery in 1999 of the gene that causes Rett syndrome, laboratory research in 2007 that proves the theory of reversibility of the disease, the discovery in 2010 of breakthrough testing with in vitro models, and the launch of an FDA-approved treatment, with more in the pipeline, we now reach an unprecedented and historic moment in time where we must do everything possible to advance research that creates truly life-changing solutions for all with Rett syndrome; and

WHEREAS, We must continue our efforts to bring awareness of Rett syndrome to the medical community, pharmaceutical industry, researchers, therapists, teachers, caregivers, and the general public. We must have funding available for researchers who are dedicated to finding a cure for Rett syndrome. We support this shared mission now more than ever and together progress will continue until there is a world without Rett syndrome; now, therefore, be it