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

Celebrate Rare Disease Day with HDSA on February 29th   When you have a rare disease, you face two battles – one being the illness itself, and the other, living in a world where so few people understand what you’re up against. The HD community is no stranger to these battles, but we also know firsthand that while we may be rare, we are mighty and getting stronger together each day. Thursday, February 29th is Rare Disease Day 2024, and HDSA is joining forces with individuals from over 7,000 rare diseases affecting 300 million people ,their families, and carers to raise awareness about ..read more

HDSA Names 57 Centers of Excellence and 11 Partner Sites in 2024    This week, HDSA announced its Centers of Excellence network will grow in 2024! HDSA named one new Center of Excellence for a total of 57 HDSA COEs and 11 regional partner sites. These grants total $2,100,557 of support for expert HD care at 67 distinct medical facilities in 37 states across the nation and Washington, DC.    Professionals at these locations include neurologists, psychiatrists, social workers, therapists, and counselors with extensive HD experience who work together to provide care and suppor ..read more

HDSA Convention Scholarship Applications due March 1st    Join HDSA in Spokane, Washington from May 30th – June 1st for HDSA’s 39th annual Convention. To reserve your spot today at the early-bird rate or to see an overview about Convention scholarships, click here and scroll down the page. If you are interested in applying for a scholarship to attend, submissions are due on Friday, March 1st. More information about Convention scholarships and the application can be found on this page. There are scholarships available for first-time attendees, Washington residents, and New Jersey and ..read more

Upcoming Research Webinar: uniQure discusses AMT-130  Join HDSA on February 13th for a research webinar in which uniQure will present the latest update about their study of HD gene therapy AMT-130 in the ongoing HD-GeneTRX trial, and answer community questions. Speakers include Dr. Ed Wild, FRCP, Professor of Neurology at University College London, and Walid Abi-Saab, MD, Chief Medical Officer at uniQure. You can register to join here.    Online Surveys: Dietary Habits in HD, Attitudes toward Genetic Testing, Experiences with Psychotherapy   HDSA works with researchers all ..read more