International HD Awareness Day   The global Huntington’s Disease community celebrates May 15 as the International Huntington’s Disease Awareness Day, a special day for the global Huntington’s Disease (HD) community to unite to raise awareness for Huntington’s Disease. You can help HDSA turn up the volume on HD awareness during the entire month of May – check out our Let’s Talk About HD campaign!  This Month in HD History  In May of 1997, a few years after the CAG repeat mutation that causes Huntington’s disease had been discovered, scientists and doctors made another import ..read more

Brain Donation Awareness Day   HD is frequently studied in animal models that reveal important information about the disease, but humans are the only species to naturally develop HD. This means that studying HD as it occurs in people is critical for understanding the basic biology of the disease and finding drugs to treat it.  Brain donation is one invaluable contribution that individuals affected by HD can make toward furthering HD science. In celebration of Brain Donation Awareness day, which occurs every year on May 7th, the most recent article from HDBuzz discusses the impacts of ..read more

Happy HD Awareness Month!    May is Huntington’s Disease Awareness Month, and we need your help to turn up the volume on HD awareness! #LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD. It can be a video, a photo or a written story – HD impacts every family differently and it’s time the world knows our story. All stories are welcome – research included! Together we can spread awareness about Huntington’s disease. Learn more here.   Neurocrine Biosciences announces approva ..read more

HDBuzz: “How many is too many?” New research on CAGs   HD is caused by an expansion of C-A-Gs in the huntingtin gene which tends to grow over time. Some scientists believe that if this expansion can be slowed or stopped completely to prevent those CAG repeats from expanding to a length that poses harm to cells, it may delay or prevent HD symptoms from ever occurring. Researchers from the Lab of Dr. Gill Bates, an expert HD scientist based in London, have done extensive work studying HD mice to investigate whether there is a threshold of CAG repeats that leads to symptoms of HD. Their ..read more

Help4HD discusses SAGE-718  Cognitive changes are a frequent early symptom of HD that can have major impacts on quality of life. Cognitive decline can affect numerous pieces of daily living like cooking a meal, doing mental math, using transportation, or managing finances. Recently on the Help4HD podcast, host Lauren Holder was joined by Jennifer Petrillo Billet from Sage therapeutics to talk about the significance of cognition in HD and the importance of patient-reported outcomes to track cognitive change over time. The pair also discuss SAGE-718, a drug taken by mouth that is aimed at a ..read more

Tracks of HD Tears: HD Buzz on new markers of HD progression  Researchers from Germany and the Netherlands have been developing a new tool to investigate HD in a non-invasive way. The collaboration between academic researchers and pharmaceutical companies found that huntingtin protein was detectable in human tears. Biomarkers like huntingtin protein are things we can measure to give a snapshot of what is happening in a person’s body. They are important for tracking the health of someone with HD, and to determine whether an intervention or medication is successful. Non-invasive biomarkers ..read more

The Talk on Tau: Cognitive changes in HD  The onset of HD symptoms varies; even individuals with the same number of CAG-repeats may differ greatly in their earliest presentation of the disease. Researchers from Barcelona, including 2019 HDSA HD Human Biology Fellow, Dr. Saül Martinez-Horta, recently published a study that explored whether the buildup of Tau, a structural protein in the brain that can be toxic in high amounts, may contribute to early cognitive symptoms in people with HD. 30 participants with HD were assessed by researchers via movement and cognitive tests, brain imaging, a ..read more

HDSA Launches 2024 HD Human Biology Project Letter of Intent  HDSA is proud to announce the 2024 Request for Proposals for the HD Human Biology Project. Despite the identification of the gene responsible for Huntington’s disease (HD) over 30 years ago, there is not yet an effective treatment to slow or stop the progression of symptoms. While remarkable advances in HD biology have been made using animal models, the development of effective therapies requires research in humans. As a result, HDSA has adopted a human-centric research strategy to push the HD field closer to slowing progressio ..read more

Update from Prilenia: Pursuing pridopidine for HD   Earlier this week, Prilenia issued a press release and community letter announcing their intent to submit a Marketing Authorization Application (MAA) in the EU for Pridopidine in HD.    This application will be submitted to the European Medicines Agency, the equivalent of the FDA in Europe. It does not mean that the drug will be approved; it means that the EMA will evaluate the science and the data to make a decision. Prilenia also notes that they will have upcoming discussions with the FDA about a path forward in the USA.  ..read more

HDBuzz Updates from the 2024 HD Therapeutics Conference   Last week, from February 26th – March 1st, HD researchers from all over the world gathered to discuss their work at the 19th annual HD Therapeutics Conference, hosted by the HD research foundation CHDI. Over three full days, scientists and industry representatives presented dozens of talks and hundreds of posters across a wide range of HD research topics. HDBuzz live-tweeted summaries of the talks in lay language which are now available as articles at www.hdbuzz.net for Day 1 and Day 2, and Day 3.   An advocate’s take on the C ..read more