The mission for the Huntington's Disease Global Ecosystem Map (HD GEM) is to further engage with the "silent" 70% of the HD community by helping those impacted by Huntington's disease(HD) find the resources they need to better assist them on their HD journey. This not for profit project was started and created by Casey Herrington with the guidance of an advisory team made up of leaders within the HD community.
Casey has been working for the Huntington's Disease Global Ecosystem Map full-time since receiving grant funding in 2018. His involvement in the HD community was sadly inspired by personal loss; his mother passed away from Huntington's disease in 2013 when she was just 46 years old. He and his three sisters remain at risk of developing the disease. With an entrepreneurial passion, Casey is striving to aid in the fight of creating a world without Huntington's disease.
Darcy is an HD warrior who serves many roles in the HD community such as a board member for HDSA's Minnesota Chapter, Regional Lead for the Upper Midwest Region for HDSA's National Youth Alliance, Marketing Coordinator for HD GEM and has won awards for giving a voice to HD. Darcy has also been featured on the Because I Can website and is known for sharing her story openly around the world.
Chairman, Huntington's disease Youth Organization
CEO, Griffin Foundation
Vp, global neurodegenerative diseases, previously at teva
Executive Director, HD REACH
President, Help 4 HD internationanl
Senior Director, Mission and scientific affairs, huntingtons disease society of america