Affiliations: Huntington’s Disease Society of America (HDSA), New York, NY, USA
Correspondence to: George Yohrling, PhD, Senior Director, Mission and Scientific Affairs, HDSA, 505 Eighth Avenue, Suite 902, New York, NY 10018, USA. Tel.: +1 212 242 1968; Fax: +1 212 239 3430; E-mail: [email protected].
Abstract: For individuals faced with Huntington’s disease (HD), there is no lack of access to information about the newest HD research topics and care trends thanks to social media and online news feeds. Unfortunately, making sense of this volume of information presents a modern challenge to families who are eager to follow every whisper of hope. Scientists with research news to share should be mindful of the dialog in which they are participating and of the hopes that they may be raising as they seek awareness for their work. To help families navigate these waters, patient advocacy organizations must remain a vigilant counterbalance by providing access to expertise and context to information that stewards the hope of HD families responsibly.