COMMUNITY INVOLVEMENT
My family and I are very involved with foundations and organizations that offer resources and support for people with Fragile X Syndrome as well as other developmental disabilities.Fragile X Syndrome is the most common cause of inherited intellectual disability and the most commonly known genetic cause of autism or autism spectrum disorders. It is a genetic condition that can cause learning problems, intense anxiety, seizures and more. A DNA test for Fragile X is widely available and very accurate. This blood test can detect carriers and fully affected individuals. Any doctor can order the test. Unlike many genetic diseases, it may not be apparent that a person has Fragile X. It can be subtle or severe. Some girls have no signs at all.
Appropriate education and therapies can help, and many medications are available that target symptoms. However, because there is no specific treatment or cure yet, I stay actively involved in many groups to advocate on behalf of people with Fragile X and to push for increased funding to find a cure and provide resources for these families.
The groups with which I am involved include:
- Board Member, South Carolina Fragile X Resource Group (Serving the children and families of South Carolina impacted by Fragile X)
- Board Member, South Carolina Developmental Disabilities Council (Serving the people of South Carolina via the Governor's Team)
- Past Board Member, Lexington School District 1 Educational Foundation (Serving the people of Lexington, South Carolina, via the Educational Foundation)
- Past Board Member, Midlands Special Needs Foundation (Serving the children and families impacted by special needs related challenges in the Columbia metropolitan area)