Revs 4 Rett is dedicated to improving the quality of life of individuals and their families impacted by Rett Syndrome. We exist to engage in advocacy, education and awareness efforts, and raise funds to support the search for a cure.
Revs 4 Rett is a volunteer driven organization, consisting of family members and supporters whose lives are touched by Rett Syndrome.
We are affiliated with the Ontario Rett Syndrome Association, a non profit organization Registration # 890178999RR0001
What is Rett Syndrome?
Rett syndrome rare genetic neurology condition characterized by the loss of spoken language and hand use, coupled with the development of distinctive hand stereotypies.
This disorder is seen in infancy and occurs almost exclusively in females, even rarer in males. It is usually caused by a mutation of the MECP2 gene on the X chromosome.
Rett syndrome is found in all racial and ethnic groups throughout the world. It affects 1 in every 10,000 live female births.
Early developmental milestones appear normal, but between 6-18 months of age, there is a delay or regression in development, particularly affecting speech, hand skills and gait.
A hallmark of Rett syndrome is repetitive hand movements that may become almost constant while awake. Other more common medical issues encountered include epileptic seizures, muscle stiffness, osteoporosis and scoliosis.
Despite its multiple handicaps, Rett syndrome is not a degenerative disease. Many individuals with Rett syndrome live long into adulthood.
There is currently no cure.
Our mission is to spread awareness about
Rett Syndrome, raise funds for research opportunities, advocate for rare diseases and
provide knowledge to our community.
We seek to assist in finding a cure for Rett Syndrome. Until a cure for this disorder is found,
we envision a world where individuals with Rett Syndrome and their families have access to the resources, care and support they need.