My wife, Jill, and I selected “A Family Tradition” as the name of this column because of the genetic nature of Huntington’s disease (HD). If someone has the HD gene mutation, their children have a 50% chance of inheriting the disease. It’s a tradition that no one…
Second in a series. Read part one. As my wife, Jill, experiences Huntington’s disease (HD) progression, we must prepare for all aspects of her care. Recently, she wanted to start thinking about our financial future. She knows that HD can be a financial burden, as the rare…
First in a series. My wife, Jill, who was diagnosed with Huntington’s disease (HD) in 2018, doesn’t like to think about what’s in store for her. She knows her illness will progress in cruel ways, so she prefers to live in the present moment. But recently,…
Help4HD is a nonprofit organization with a mission to educate the world about Huntington’s disease (HD) and juvenile Huntington’s disease. Its aim is to serve our community and provide information, education, and resources. Help4HD hosted its annual family symposium in Nashville, Tennessee, October 7-8, and it was…
One of the supervillains from my childhood was Mr. Freeze, who was featured in DC Comics and the 1960s “Batman” television series. For years, I associated the word “freeze” with negative connotations because Mr. Freeze was such an evil character. Nowadays, “freeze” is a word I’m grateful for…
Thinking about death isn’t pleasant, and neither is talking about it. But my wife, Jill, who is gene-positive for Huntington’s disease (HD), asked me to write about the topic. In particular, she wanted me to discuss the importance of making a living will. Being proactive in this manner…
The pharmaceutical company Teva is turning to social media to help people with Huntington’s disease (HD) to improve the management of chorea — a hallmark motor symptom that an estimated 90% of patients with the neurodegenerative disorder will develop. The company, fully Teva Pharmaceutical Industries, has established…
The month of August just happens to be when I, my wife, Jill, and her nephew, Jackson, were born. Jill loves birthdays — except hers. This year, I truly understood why. To celebrate, we visited Boston, where our daughter, Alexus, and her husband, René, live, as well…
Who knew a bucket of gum could make such a big difference in the life of a hospital patient? During the last few years of my father’s life, he had issues with diabetes, something he suffered with for years. The older he got, the more his body had a harder…
ProQR Therapeutics’ experimental therapy QRX-704 significantly reduced levels of the toxic huntingtin (HTT) protein clumps that fuel Huntington’s disease in a mouse model of the disease, a study showed. The therapy, an antisense oligonucleotide (ASO) designed to promote the generation of a shorter, but working version of…
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