Tortured Hope: What is it like growing up at risk for Huntington’s Disease?

Lori Jones shares her personal journey with Huntington's disease, exploring its symptoms, family impact, and the importance of community and research. Lori shares with us insights into living with risk, making decisions about testing, and advocating for better understanding and treatment.

 

Keywords: Huntington's disease, genetics, neurodegenerative, family impact, genetic testing, community support, research, memoir, advocacy

 

Key Topics:

• Genetic inheritance and risk of Huntington's disease
• Family impact and personal stories of living with HD
• The importance of community, support, and advocacy in HD
• Current research, clinical trials, and future hope for HD treatments

 

Guest Bio:

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. A storyteller at heart, she regularly writes and speaks about her experiences with HD and many other topics to groups of all ages. 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: A Memoir of Risk and Resolve” is her first book.

 

Resources:

• Lori Jones’ Website
• Spared: A Memoir of Risk and Resolve
• Help 4 HD International
• International Huntington Association
• Huntington’s Disease Society of America
• Information on uniQure

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