One summer when I was in middle school, my parents and I went to Florida to visit family. On a gorgeous day (well, as much as wet heat can be gorgeous during the summer), my mom, dad, and I went to Marina Jack…
A potential treatment called RG6042, which target all forms of the mutant huntingtin protein (mHTT) — the underlying cause of Huntington’s disease, has been named an orphan drug by the Ministry of Health,…
In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…
Recently, our daughter, Alexus, came home for a weekend visit. It was wonderful, and the weather was perfect. We ate delicious food and had one big ball of fun. We are lucky to live in an area with many things to do. The weather has been so gray lately, but…
Use of antihypertensives — medications used to treat high blood pressure — is associated with milder disease, slower progression, and delayed clinical onset in people with Huntington’s disease, a study found. The findings suggest an “exciting future avenue to explore the repurposing of specific antihypertensive medications for the…
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…
Alpha-synuclein, the protein implicated in Parkinson’s disease, may play a role in Huntington’s disease after researchers found elevated levels of the protein in patients, a recent study suggests. The study, “Elevated Serum α-Synuclein Levels in Huntington’s Disease Patients,” was published in Neuroscience.
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar. William Whitman…
Because Feb. 29 is Rare Disease Day, I thought it would be a good idea to talk to my wife about what makes her so rare. Jill was diagnosed with Huntington’s disease in 2018. In the U.S., the number of people who have the disease is about…
Linda Lacroix of Milton, Vermont, never imagined that at the age of 68, she’d be working as a lunch lady at the local high school cafeteria. But that’s what she’s had to do to pay the mortgage on the family home so her 67-year-old husband, Joe, has a place to…
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