Family Planning The decision to have a family comes with a great deal of responsibility, and many important choices. For people with Huntington’s disease (HD), one of the most pressing considerations in their decision to have children relates to the disorder. People with HD have a 50% risk of passing…
More
In the Private Practice episode called “In Which Charlotte Goes Down the Rabbit Hole”, a character named Angie has misled her husband in believing she does not want a family. She has also led him to believe that he is infertile. Angie wants the doctors to lie on her behalf…
More
In Eternal on the Water Jonathan Cobb meets the love of his life, Mary, while kayaking in backcountry Maine. Their perfect love is shortened by Mary’s illness of Huntington’s disease (HD). Published in 2010, this book is a fictional account of Jonathan and Mary coming to terms with the consequences…
More
Following her great success with Still Alice and Alzheimer’s disease, neuroscientist and author Lisa Genova attempts to accurately portray the disease experience of a Huntington’s disease (HD) family in her latest novel, Inside the O’Briens. Unlike most media outlets, Genova goes to great lengths to understand the disease, both…
More
This article was published on March 18, 2007 on the front page of the Sunday edition of The New York Times. The full article can be found here. In 2007, the Sunday edition of the New York Times had a circulation of approximately 1.6 million. This meant that on Sunday,…
More
Individuals at risk for Huntington's disease (HD) have the option of undergoing genetic testing, which detects the presence or absence of the genetic sequence that causes HD. The decision of whether or not to undergo genetic testing is intensely personal, with many factors to consider. This chapter will provide scientific…
More
Part of the lived experience of being at risk for or living with Huntington’s disease (HD) is thinking about the unique challenges involved with planning a family. Although the possibility of HD being inherited can make the decision of having a baby very difficult, various options have been developed for…
More
By Maria Suarez-Nieto and Sepehr Asgari On the 2nd of November, 2019, the Stanford University School of Medicine’s Huntington’s Disease Center of Excellence held their inaugural Stanford Huntington’s Disease Patient Care Symposium. Hosted in Mountain View, California, the event saw the participation of HD patients, caretakers, healthcare professionals, students, and…
More
What are our HOPES alumni up to now? Aimee Zhang – Project Leader & Student Researcher; B.A. in Psychology Since graduation, I have continued doing research in clinical psychology. For a year, I was working at a mental health startup in San Francisco. I am currently enrolled in a clinical…
More
On April 9th, HOPESters Natty and Caitlin attended Help4HD’s 3rd annual symposium in Sacramento, California. The all-day event featured a wide range of presentations from speakers representing academic institutions, pharmaceutical companies, and research groups. The event honored the work and retirement of Terry Tempkin, RNC, MSN, ANP. Terry is…
More
Hannah Boutros January 21st, 2016 This is a short story about Tommy and his family. Tommy is an 8th grader who loves learning about the brain. After his uncle is diagnosed with HD, Tommy decides to learn more about the neuroscience behind HD so that he can explain it to…
More
The television medical drama House is one of the most famous examples of the use of Huntington’s disease in the media. One of the main characters, Thirteen, is affected by Huntington’s disease in many different capacities, and several episodes are devoted to exploring the emotional impact of HD. In this…
More
“Like Father Like Son?” Ben and Trisha’s family have dinner together and discover that support and camaraderie goes deeper than their mutual concerns about HD. Although the gathering ends happily, Ben is agitated by the thought that his son, who is like him in almost every way, will eventually develop…
More
Saturday, February 11, 2011, marked the ninth-annual HD research symposium at the University of California at San Francisco. The UCSF Memory and Aging Center and the HDSA Center of Excellence at UC Davis Medical Center partnered to present this free public conference where attendees could learn the latest in HD…
More
Neuroimaging refers to techniques that produce images of the brain without requiring surgery, incision of the skin, or any direct contact with the inside of the body. Because these technologies enable noninvasive visualization of the structure and functionality of the brain, neuroimaging has become a powerful tool for both research…
More
Stages-of-HD People with Huntington’s disease (HD) follow a path of disease progression once symptoms begin. While patients can remain highly functional in the first years of the disease, independence gives way as symptoms get worse. This article discusses the ways in which HD symptoms change from one stage to the…
More
HOPES is a team of faculty and undergraduate students at Stanford University dedicated to making scientific information about Huntington’s disease (HD) more readily accessible to the public. Our goal is to survey the rapidly growing scientific literature on HD and to present this information in a web source. We seek…
More
The following chapter aims to compare Huntington’s disease to other neurological diseases such as Alzheimer’s disease and Parkinson’s disease.
More