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- - - Contact Us
    - HOPES Alumni
  - - Huntington's Outreach Project for Education at Stanford (HOPES) is a student-run project at Stanford University with the goal of making information about Huntington’s Disease (HD) more accessible to audiences worldwide. Our site is intended to be an educational resource, and address a range of topics through written articles and podcasts.
Science of HD
Managing HDThough people with the HD allele will eventually show symptoms, there are many lifestyle choices that can make the disease easier to manage. People with HD can engage in many activities – such as physical therapy and exercise – that help them deal with symptoms. Also, scientists have recognized that genes only tell part of the story, as described here. There is great variability in age of onset and progression of disease, only about 40% of which can be explained by the number of CAG repeats – and lifestyle choices might account for some of that variability. So while no one can choose their own genes, people at risk for HD can choose a healthy lifestyle.
- - - Assistive Technology for HD
    - Drugs and Supplements
  - - Though individuals with the HD gene will develop symptoms, lifestyle choices such as dietary restrictions, physical therapy, and exercise may help manage symptoms when they develop. Research shows that these choices could explain the variability in age of onset and progression of disease observed in HD patients.
Global HD
- - - Huntington’s Disease impacts people around the world with a growing occurrence, which may have important biological, economic, and social implications for the future. All over the world, communities impacted by HD are coming together to work towards new solutions and ways to cope. Our team has developed a graphic concordant with other cartographic representations of HD prevalence.
HOPES Podcast
- - - Our new HOPES podcast aims at sharing stories and voices of caretakers, doctors, and those impacted by Huntington’s Disease. We hope this medium allows information to be more accessible and educational for audiences, and creates a space to discuss topics important to the HD community.
Resources
- - - For Kids
      - The Facts of Life
    - HD in the MediaDespite the fact that many people are not completely aware of HD and how it works, the disease has become one of the favorite “dramatic diseases” of mainstream news media and the entertainment industry. References to HD in popular culture include, but are not limited to, books (as evidenced by our site’s Literature Corner), television shows, films, radio programs, and newspaper articles. The purpose of this section of our website is to approach all depictions of HD in the media with a critical lens media outlets often dramatize their depictions of medical conditions in an attempt to draw in viewers and readers. Symptoms are portrayed as much worse than they are in reality, incorrect diagnoses are provided, and false information is presented to audiences around the world. To correct these misconceptions, members of the HOPES team will be going through various depictions of HD in the media to determine what aspects of HD are presented properly and what aspects are misrepresented. This section includes a synopsis of the media’s depiction of HD as well as a discussion of whether it was realistic and medically accurate.
  - - HOPES News
      - Newsletters
    - Literature CornerHere you will find reviews on published resources related to Huntington’s disease.
  - - The HOPES team aims to make our Huntington's Disease (HD) information and resources accessible to people of all HD backgrounds and experiences. We hope these tools, mediums,and different resources encourage HD education and awareness throughout HD communities and beyond.

Ethan’s Dad

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Recent Posts

Listen to the HOPES Podcast on Spotify, Youtube, Amazon, and more!
HOPES Podcast Episode 12: Talk to the Doc: How Can We Expand Access to HD Care? ft. Dr. Alexandra Duffy
HDSA Education Day
Roche HD1 Study Recap
Book Review: Five Days Left by Julie Lawson Timmer

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Recent Posts

Listen to the HOPES Podcast on Spotify, Youtube, Amazon, and more!
HOPES Podcast Episode 12: Talk to the Doc: How Can We Expand Access to HD Care? ft. Dr. Alexandra Duffy
HDSA Education Day
Roche HD1 Study Recap
Book Review: Five Days Left by Julie Lawson Timmer

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