Inspired By Amelia

This may be one of the most important pages of all, as we are inspired and motivated daily by Amelia’s story, fight, compassion, and devotion to the chronic illness community. She helped found Dysautonomia International and passed in 2016 after a fierce battle with a rare neuromuscular disease. She also developed dysautonomia and became an incredible advocate for the dysautonomia and chronic illness communities. We will aspire to continue her legacy and support the POTS/chronic illness community with the love, devotion, kindness, and compassion that she relentlessly shared with everyone she encountered.

Dory Moore, Amelia’s mother, wants to encourage you to not give up, as difficult as your journey may be, and to continue to pursue the specialists that you know you need. Although they experienced a great deal of dismissal and pain in their journey to find supportive specialists and answers, and it took five years for Amelia to get properly diagnosed with dysautonomia and even longer to receive the proper genetic testing for her neuromuscular disease, they did eventually find providers who were paramount in providing the care Amelia and her family needed for her. Her message to you is that there are so many reasons to remain hopeful, even if you are struggling to find what you need right now. With more advocacy, awareness, and education, the hope is that finding supportive providers, accurate diagnoses, and effective treatments will become much easier.