Abstract

Huntington’s disease is a hereditary neurodegenerative disorder that affects over 15,000 Americans. There are an additional 150,000 Americans that have a 50% chance of developing Huntington’s.1 Currently, there is no cure for Huntington’s disease but patients can receive treatment for their symptoms. This disease not only takes a physical toll on a person, but also an emotional one. Support groups and adequate care are ways for HD patients to reach out to others and feel like they are receiving sufficient treatment for their debilitating disease. The official Huntington’s Disease Society of America (HDSA) support group in Orlando had stopped meeting during the 2010 year. This prompted the notion that more structured support was needed for Huntington’s disease in the Central Florida area. By distributing an online survey using social media to those affected by Huntington’s and those at risk, we were able to determine the greatest needs and concerns for local HD care. The survey showed that HD patients believed emotional and medical support were lacking in Central Florida and that patients wished to receive this support in the form of e-mails, online, and structured support groups. While the survey data was being collected, the HDSA group from Tampa, Florida began a support group in Orlando. To fulfill the desires requested by survey participants, we have been advertising group meetings and are continuing to seek new outlets of publicity for increasing awareness of HD and the support offered in Central Florida.