U.S. lawmakers have again introduced legislation that would speed up the process for Huntington’s disease (HD) patients to get Medicare and Social Security Disability Insurance (SSDI) benefits. The Huntington’s Disease Disability Insurance Access Act of 2021 — S 868/ HR 2050 — would waive the mandatory two-year…
This week, my wife, Jill, bought meals from HelloFresh, a company that sells kits with the ingredients and the recipes to cook at home. Apparently, because of the pandemic, something known as “cooking fatigue” has led many people to tire of the repetitive chore of starting from scratch.
Sarah Lynn Mays learned she wouldn’t be returning to Northwestern University for her scheduled intrathecal injection of tominersen when her younger sister called to give the news — Roche was stopping dosing for its Phase 3 clinical trial of the Huntington’s disease treatment.
Treatment with tominersen failed to show evidence of clinical benefit in adults with Huntington’s disease during the Phase 3 clinical trial GENERATION HD1. Roche, the company developing tominersen, decided to pause dosing in the clinical trial about a month ago, after a pre-planned review of trial data…
Activities are underway worldwide to mark Huntington’s Disease Awareness Month, set aside each year to call attention to the neurodegenerative disorder that is thought to affect three to seven per every 100,000 people of European ancestry. May 15 is International Huntington’s Disease Awareness Day. Patients, caregivers, family, and friends…
I recently received an email from Kelli Yoder, the communications manager at Adira Foundation, an organization whose mission is to “invest in better lives for people with neurodegenerative diseases.” She wrote that the foundation had enlisted the help of StoryCorps, a…
As I wrote in a previous column titled, “An Abundance of Huntington’s Disease Info Awaits at Upcoming Virtual Conferences,” there are many ways to learn about the latest and greatest happenings in the HD community. I attended last month’s Huntington’s Disease Youth Organization’s International Young Adult Virtual Congress,…
The U.S. Food and Drug Administration (FDA) has granted Voyager Therapeutics permission to start a clinical trial testing VY-HTT01, its investigational gene therapy for Huntington’s disease. Voyager is planning to launch the Phase 1/2 clinical trial, called VYTAL, later this year. VYTAL will be a dose-escalation study, meaning that…
Buried in my brain is a Proustian memory. It occurred during my elementary school graduation ceremony when the principal played the song “The Way We Were,” by Barbra Streisand. Any time I hear that song, I am transported back to hearing Streisand’s voice: “Mem’ries/ Light the corners of my…
I learned about my mother’s Huntington’s diagnosis and my own risk during my senior year of college. I was devastated by the news, which exacerbated my anxiety. At the time, I had a therapist who told me to write down all of my fears and anxieties…
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