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CRISPR, curing Huntington’s disease, and humanity’s future in Isaacson’s...
In a new book about the broad issue of editing human DNA, a prominent biographer of scientific innovators proposes that such cutting-edge, potentially curative gene editing research prioritize...
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Bidding farewell to my ‘mind coach,’ a major ally in in my fight to avoid...
In December, my psychotherapist will retire, ending for me a professional relationship of 24 years that became the most personal of bonds and an emotional bulwark in my fight to delay – and prepare...
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A proud Huntington’s disease gene carrier’s message to his ‘miracle baby’...
When I tested positive for the Huntington’s disease genetic mutation in 1999, at 39, I was convinced I was doomed to repeat my HD-stricken mother’s onset of symptoms in her late 40s. I had tested...
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Huntington’s disease advocates, scientists generate hope after a difficult...
In one of the most difficult years emotionally in the fight to conquer Huntington’s disease, advocates, scientists, and HD-affected individuals have generated hope as 2021 draws to a close. The...
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After setback, Roche to run new clinical trial with Huntington’s disease gene...
After halting dosing in the historic Phase 3 clinical trial for its Huntington’s disease gene silencing drug tominersen last March, pharmaceutical giant Roche announced today that it will start a...
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History, Huntington’s disease, and the survival of the human race
With thousands of people continuing to die from the COVID pandemic and the planetary climate crisis worsening, the Russian attack on Ukraine and the dictatorial Vladimir Putin’s threats of nuclear...
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After a difficult year for the Huntington’s disease cause, CHDI chief...
Having faced negative results in two key clinical trials a year ago while battling the coronavirus pandemic, the Huntington’s disease community has renewed the quest for therapies (treatments). A...
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CHDI keynoter Charlotte Raven reflects on her fight against Huntington’s...
Like many affected by Huntington’s disease, renowned British journalist Charlotte Raven longed for the chance to participate in a clinical trial of a potential treatment for the incurable disorder....
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Surfing through life with the spirit of aloha
To persevere against neurological diseases such as Huntington’s and the aging we all face, I have learned that it is essential to develop meaning and purpose and perform mental exercise. In May 1997,...
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With the constitutional right to abortion gone, an uncertain medical future...
With the U.S. Supreme Court’s radical toppling of long-standing abortion rights on June 24, families affected by Huntington’s disease and thousands of other rare and neurological disorders face a...
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Bridging the Huntington’s and early onset Alzheimer’s disease communities: a...
In the quest to conquer chronic illnesses, members of disease communities need to build solidarity and learn from one another. I explored this theme in a 2018 article about the fellowshipthat a...
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After other firms’ setbacks, Prilenia readies for readout on Huntington’s...
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...
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Roche confirms second, more focused, trial of Huntington’s disease drug will...
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...
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After abrupt shutdown of Triplet Therapeutics, Huntington’s disease community...
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...
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Ten years out of the terrible and lonely Huntington’s disease closet, as new...
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....
View ArticleIn ‘Journal of Huntington’s Disease,’ my article analyzes record of my...
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...
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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...
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After another critical Huntington’s disease clinical trial proves negative, a...
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...
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Lessons from the Maui wildfires for human solidarity and the fight against...
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...
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Adding to arsenal of movement disorder drugs approved by FDA, Neurocrine...
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...
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New book by longtime advocate describes Milton Wexler’s incomparable...
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...
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Scientists interacting with Huntington’s disease patients in the quest for...
In the quest for Huntington’s disease therapies, scientists have found key intellectual fuel for understanding the genetics of this fatal neurodegenerative disorder and developing therapies. A...
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At CHDI conference, advocates inspire acceleration of quest for Huntington’s...
With a record 420-plus participants, the 19th Annual Huntington’s Disease Therapeutics Conference got under way on February 26 with the aim of speeding the quest for therapies to slow, halt, or...
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Huntington’s disease community will 'get there' in search for therapies, CHDI...
After presiding over a “terrific” research conference, CHDI Foundation Chief Scientific Officer Robert Pacifici, Ph.D., declared that the Huntington’s disease community will “get there” in the search...
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‘Striving for a cure’: highlights from the 19th Annual Huntington’s Disease...
Progress towards effective treatments for Huntington’s disease relies on the affected families’ collaboration with researchers exploring the frontiers of science. The potentially pathbreaking...
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