A family or genetic diagnosis can be hard, however not finding local resources we could use in practical application has proven most difficult. Support groups for the chronically ill typically do not cater to, nor wish to understand the unique diversity that exists in Eastern Kentucky. The commitment to misunderstand our needs has never been new, but it has been surprising. Nevertheless, where a need exists that can be met through activism and advocacy, we have a duty to fulfil to the best of our abilities. It is our sincere hope that we can bring a better understanding of EDS and other connective tissue diseases for the underserved in our region.