Tortured Hope: What is it like growing up at risk for Huntington’s Disease?
Genetic health podcast interview with author about being 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 Team Hope Fox Valley 5K Walk/Run events in her area to raise awareness and support for research and community programs through the Huntington’s Disease Society of America (HDSA) – Wisconsin Chapter. Her article, “Solo Voyage” was published in the Wisconsin HDSA Update Newsletter in 2009, and she has frequently spoken in the public schools about HD, genetics, ethical considerations of living at-risk, and presymptomatic testing.
Lori has contributed two short stories for Women in High Def: Boldly Living Your Purposes with Vibrant Clarity by Diane Markins. “The Perfect Gift” expounds on the uncertainty of living at-risk for HD, and “Strawberries and Other Miracles” speaks to purposeful living. A storyteller at heart, she regularly writes and speaks about her experiences with HD and many other topics to groups of all ages.
In the private sector, Jones was a Women in Tech Week feature for The Milky Way Tech Hub online publication for her article on female entrepreneurs, and she regularly creates content and speaks for professional groups and conferences, including Women in Technology - Wisconsin and The Professional Women’s Connection, Oshkosh Chapter on topics such as “Communication: From Breakdowns to Breakthroughs” and “Navigating Your Technology Career Path.”
Lori attended the University of Wisconsin – Whitewater, earning a Bachelor of Business Administration. She has been CEO of Integrity Database Solutions, LLC for over 25 years as a database designer and process consultant and currently acts as Director of Business Process Optimization for a nation-wide technology company.
Lori has three adult children and lives with her husband Chris in Wisconsin, when they aren’t escaping north to their cottage in the Upper Peninsula of Michigan to enjoy kayaking, campfires, and hiking.
“Spared: A Memoir of Risk and Resolve” is her first book.
Resources:
Lori Jones’ Website
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