An undiagnosed Huntington’s disease patient will not be offered medications to ease irritability nor understand why this is happening to them. The undiagnosed patient’s family will not report these symptoms to a healthcare professional, rather they will cope and deny and experience shame, certain there is something wrong but unable to put a finger on it."

Lori Jones

Lori Jones has personally experienced the effects of Huntington’s Disease (HD) in her family and was instrumental in starting a Team Hope annual event in her area to raise awareness and support for research and community programs. She has been published in the Wisconsin HDSA Update Newsletter, and spoken in the public schools about HD, genetics, and presymptomatic testing. She has contributed short stories for Women in High Def by Diane Markins, and she writes about life and faith for regular speaking engagements. She was a Women in Tech Week feature for The Milky Way Tech Hub for her article on female entrepreneurs, and she writes and speaks for professional groups and conferences. Lori has three adult children and lives with her husband Chris in Wisconsin, when they aren’t escaping north to the Upper Peninsula of Michigan.

Spared

Spared: A Memoir of Risk and Resolve recounts growing up in a Huntington's disease family, enduring shame and secrecy, living at-risk, undergoing pre-symptomatic testing, and caregiving, while emphasizing the importance of early diagnosis, open communication, and community support for this shared struggle.