Are you looking for support groups for Rett Syndrome in Fairhope, Alabama? If so, you are not alone. Rett Syndrome is a rare and serious neurological disorder that affects all racial and ethnic groups and occurs worldwide in 1 out of every 10,000 female births. It can be a difficult journey for families affected by this disorder, but there are resources available to help. The International Rett Syndrome Foundation is comprised of parents and friends of people diagnosed with Rett Syndrome who have walked this path.
They provide emotional support, information and resources to families affected by Rett Syndrome. Additionally, family empowerment representatives are volunteers who can provide further assistance. Clinics that specialize in Rett Syndrome can also help provide specific care for your child. United Ability's Ability Clinic offers physical therapy, occupational therapy and speech therapy services, and has treated many children with Rett Syndrome and are familiar with their specific needs. Your child may also be able to participate in studies and trials to advance the treatment and knowledge of Rett Syndrome. For example, the purpose of one study is to advance the understanding of the natural history of Rett Syndrome (RTT), MECP2 duplication disorder (MECP2 Dup), RTT-related disorders, such as CDKL5, FOXG1, and people with MECP2 mutations who do not have RTT. Finally, there are many organizations that believe that giving back to people in their communities is part of their corporate mission.
For example, Byers, a Vietnam era veteran, lives with his wife Kristi and his stepdaughter, Katelyn, 24, who has Rett Syndrome. Along the way, Byers will be joined by travel companions directly affected by Rett Syndrome. If you or someone you know is affected by Rett Syndrome in Fairhope, Alabama, there are many resources available to help. Contacting family empowerment representatives or the International Rett Syndrome Foundation should be your first step. Additionally, clinics that specialize in Rett Syndrome can provide specific care for your child and they may be able to participate in studies and trials to advance the treatment and knowledge of Rett Syndrome.