Heather was diagnosed with Dercum’s Disease in 2005 at the age of twenty after several years of struggling with inexplicable pain and weight gain. Her condition was finally diagnosed by a dermatologist at Bethesda Naval Medical Center, who dedicated much of his own time to researching her symptoms and finding an explanation.
Frustrated with the lack of understanding and knowledge of this rare disease, Heather decided to do what she could to help encourage awareness of this very serious condition. Together with medical professionals around the world, she developed The Dercum Society while stuck at home in bed, waiting for treatment.
She has a great deal of experience leading Internet-based awareness campaigns; in 2001, at the age of 16 (and while recovering from surgery), she formed the now infamous PotterWar campaign with London city councilman, Alastair Alexander. It was the first successful fan-based organization to boycott a major multi-national entertainment corporation over fan rights on the Internet. She served as the campaign’s Senior Strategist and Spokeswoman for six months before the campaign culminated in a landmark victory. PotterWar was featured in news articles around the world, by over 150 news media organizations, including USA Today, the BBC, the CBC, The Ottawa Citizen, MSNBC, and The Detroit Free Press. It is now considered a benchmark in fan-related trademark and copyright litigation.
Apart from her extensive campaigning work, Heather has also been involved in various literary causes. At the age of 14 she developed The Daily Prophet, an innovative online educational portal for children aged 10 and above. Run as a faux newspaper based around popular works of literature, children volunteer to write as columnists in the fictional worlds of their favorite books. Through this site, where she serves as Editor in Chief, she has personally tutored nearly 400 children worldwide. The Daily Prophet is now a 501(c)3 non-profit organization and she is currently managing an international programming staff to expand the website so that teachers may use this remarkable program for themselves in classrooms around the world, completely free of charge.
Heather currently resides with her family in Washington, DC. Her other interests include writing, photography, travel, and designing jewelry.