A new book portrays the largely unexplored personal and psychological context of the quest to understand and defeat Huntington’s disease: a biographical memoir of Milton Wexler (1908-2007), the founder of the Hereditary Disease Foundation (HDF) and key mover in the discovery of the HD gene.   In late 2022, Wexler’s daughter, historian Alice Wexler, published The Analyst: A Daughter’s Memoir (Columbia University Press). She is a longtime Huntington’s disease advocate and chronicler of the cause.   The Analyst adds unique dimensions to HD history, building on Alice’s groundbreak ..read more

  Neurocrine Biosciences, Inc., announced on August 18 that the U.S. Food and Drug Administration (FDA) has approved its drug INGREZZA to treat chorea, a debilitating movement disorder suffered by people with Huntington’s disease.   INGREZZA is the third FDA-approved HD chorea drug.   Like the two previously approved, similar drugs for chorea made by other drug companies, INGREZZA does not fulfill what the HD community of scientists, advocates, and affected families anxiously await: development and FDA approval of a drug to slow, halt, or reverse the progression of the disease ..read more

  In late June – vacationing in the balmy Hawaiian town of Lahaina – my wife Regina and I snorkeled at Pacific Ocean coral reefs teeming with marvelous aquatic life, dined on succulent seafood, and recharged our emotional batteries after a difficult first half of 2023.   We had celebrated our 30th wedding anniversary by traveling to Hawaii for the first time, to the islands of Kona and Oahu, in March 2022. I had never expected to reach my early 60s healthy: I carry the deadly gene for Huntington’s disease, which took my mother at 68. Inspired by the spirit of aloha, we returned with ..read more

  A long-awaited clinical trial of a drug aimed at improving daily function  in the early stages of Huntington’s disease has produced negative results, Prilenia Therapeutics announced on April 25 at the American Academy of Neurology meeting in Boston.   According to Prilenia, the drug, pridopidine, failed to show improvement for trial participants on its primary and secondary measurements of symptoms (endpoints).   "Unfortunately, the failure of the PROOF-HD trial to meet its primary endpoint in preliminary analyses is a huge disappointment for the HD community,” Jody Corey ..read more

This holiday season – with the Ukraine conflict having raised fears of a World War III and hundreds of millions of people still lacking cures for neurological disorders, cancer, and thousands of other maladies – it’s time for people and their leaders everywhere to embrace a new global ethic: #FightDiseaseNotWar.   With the U.S. sadly far in the lead, nations spend trillions annually on their armed forces.   A Huntington’s disease gene expansion carrier who lost his mother to this devastating disease, I continue to watch HD brothers and sisters face enormous hurdles in their care – an ..read more

  Today the Journal of Huntington’s Disease (JHD) published my article “Striving for a Realistic and Unapologetic View of Huntington’s Disease,” which describes how this blog has helped give voice to the HD community since 2005.   In addition to the 322 articles of this blog, I have written aboutHD inEHDN News, The Chronicle of Higher Education, Huffington Post, and collections of essays produced by HD advocates.   My JHD article is my first for a peer-reviewed scholarly journal – a key in my quest to inform the HD community and deepen my exploration of the history of the HD cau ..read more

  Ten years ago this month, I exited the “terrible and lonely Huntington’s disease closet”by publishing an essay on my plight and advocacy as an HD gene carrier in The Chronicle of Higher Education.   Fortunately, asymptomatic as I near 63, I continue to teach, research the history of the HD cause, and enjoy family milestones such as my gene-negative daughter Bianca’s graduation from college and my wife Regina’s and my 30th anniversary celebration – eventsthat I feared HD would prevent me from appreciating.   As we approach Thanksgiving, my favorite holiday, I feel a profound gr ..read more

  Triplet Therapeutics, Inc., a Cambridge, MA-based start-up that aimed to transform the treatment of Huntington’s disease and related disorders, has shut down, citing a lack of new investment partners and the discovery that its proposed HD drug caused harmful effects in animal tests.   On October 11, Triplet CEO Nessan Bermingham announced the company’s closure on his LinkedIn page. The abrupt closure was another piece of tough news regarding potential therapies for HD.   In March 2021, Roche and Wave reported negative trial results for drugs aimed at reducing the toxic mutant ..read more

  As anticipated, the pharmaceutical firm Roche will retest its Huntington’s disease gene silencing drug, tominersen, by enrolling a more limited group of volunteers for a new clinical trial, which should start in early 2023.   Roche announced the new trial, GENERATION HD2, on September 18 at a meeting of the European Huntington’s Disease Network (EHDN) in Bologna, Italy. Roche also issued a letter to the HD community.   Roche halted the GENERATION HD1 trial of tominersen in March 2021 because of lack of efficacy against HD symptoms.   However, after months analyzing the GE ..read more

  August brought more difficult news for the Huntington’s disease community with the halting of yet two more clinical trials. However, Prilenia Therapeutics announced at a major research conference last week that it expects to obtain definitive results from a study of a drug proposed to improve function in the early stages of the disease.   Prilenia CEO and founder Michael Hayden, M.D., Ph.D., a leading HD scientist, reported that the Phase 3 clinical trial of pridopidine is on schedule, with administrators expected to release results early in the second quarter of 2023. (Click here ..read more