If you want to be in the know about what’s going on at our organization, you’ve come to the right place. Be sure to check back regularly to get our latest news updates.
A spotlight on inspiring stories about people living with neurological diseases including HD published by Genentech.
Pain has less of an effect on the daily lives of people with Huntington’s Disease than the general population. Because the area of the brain damaged by Huntington’s is also one of the areas involved in the perception of pain, Huntington’s patients are less burdened by pain. This lack of perception of pain, may result inadequate treatment of ailments. If you want to learn more, check out this article:
This article is not specifically about Huntington's Disease, but another genetic disease and how this family dealt with the challenges that came with it.
Some would-be parents who might have inherited the fatal gene want their doctors to keep secrets—even from them.
Reporter Allie LaForce and Astros pitcher Joe Smith are testing their embryos to ensure that their child won't have Huntington's disease
Check out this article co-authored by HD Reach's founder and Medical Director Dr. Mary Edmondson. Clinicians treating patients with HD are often not trained to recognize or treat neuropsychiatric symptoms of the disease, according to new guidelines published in JHD.
First Patients enrolled in HD Natural History and Phase III GENERATION HD1 clinical trials!
A method called quantitative electroencephalography (qEEG) enables the identification of Huntington’s gene carriers and could become a disease biomarker, according to a pilot study.
Update on RG6042 GENERATION HD1 Study: Expected Sites in USA & Canada
Check out what the NC Triad support group came up with to reflect how we'd like to enjoy our family gatherings especially when we're dealing with the challenges of HD!
Are you a high school senior or enrolled college student caring for a loved one with HD and need some tuition assistance? Caring.com is awarding two $1,500 scholarships to student-caregivers. Be sure to apply before December 31, 2018!
Dr. Bonnie Hennig-Trestman, LCSW, DSW discusses how HD and JHD families can navigate through the holiday season with less stress and more enjoyment.
This 15-month observational study aims to further understand the role of mutant huntingtin protein in disease progression. There is no drug treatment in this study, as the goal is to understand the natural progression of HD. This study will include up to 100 participants with early manifest (Stage I and II) HD at up to 17 sites in Canada, Germany, the United Kingdom and the United States.
Caregiving is a valuable position in our HD community which often goes unrecognized. Let's look at what National Family Caregivers Month is and how you can celebrate it.
Shop Amazon through Nov 2, 2018 and you can support our work, AmazonSmile is donating 5% (ten times the usual amount) to HD Reach!
Two proteins present in the blood and brains of patients with Huntington’s disease may be used as biomarkers to detect the earliest changes caused by the disease, according to recent research.
Juvenile-onset HD is really rare, but a new study has helped us understand what the symptoms are and how they change over time. This is really important and in time will help us work out whether huntingtin-lowering and other treatments work in kids.
Patients thrill to reports of a promising antisense drug against Huntington disease, but no one is sure yet whether it works.
Through unified communities, regardless of geographic location, HD patients and families can join together to change the landscape of opportunities for similar families to come.
The LEGATO-HD trial of laquinimod to slow progression of Huntington’s disease did not meet its primary endpoint. What’s an endpoint, and what does this all mean for HD families?
Burton Scott, MD, PhD, and Al La Spada, MD, PhD. Scott discusses the cognitive and mental symptoms people with Huntington’s develop, while Al La Spada, MD, PhD, discusses potential treatments for the condition that are under development.
Exciting news for the HD research field this month as a new genetically faithful model has been created in pigs. Using a combination of cutting edge DNA editing tools researchers were able to generate HD pigs that not only replicated the selective brain cell death seen in HD, but also a broad range of symptoms observed in HD.
Watch this video from HDSA on how the swallow function is impacted by HD.
A video of Ann Lassiter, HD Reach's Executive Director, sharing her big takeaways from the Annual HDSA Convention in Los Angeles in June. Ann talks about ways to stay involved in the promising research going on and shares a message of hope!
June update: Getting to know Roche/Genentech and their philosophy on working with the HD patient community, commitment to collaborate to advance science, and the investigational molecule RG6042 development program.
A recent article reports that aggression is common in individuals with Huntington's disease. Authors report rates of aggressive behaviors between 22% (for clinic patients) and 66% (for hospitalized patients) among individuals with HD. What do they mean by aggression, and how should we interpret these numbers? It is important to remember that aggression (as defined in this article) and violence are NOT the same thing.
This month, patients with Huntington’s disease are asking for what worked for patients with ALS and other debilitating diseases–parity to accessing Medicare benefits. The request is a focal point for May’s Huntington’s Disease Awareness Month.
Recently the Critical Path Institute announced a new effort - the Huntington’s Disease Regulatory Science Consortium, or HD-RSC. This collaboration with many international partners aims to speed the development of new HD treatments. What’s all this about, and how could it help HD patients?
The updated site is a guide for people who have been denied coverage, reached a limit on your plan (such as copayments, deductibles, yearly visits, etc.), or have an overly large copay or deductible.
RG6042 (formerly known as IONIS-HTTRx ) development program update and presentation of Phase I/IIa study at world’s largest neurology conference.
UPDATE: On April 24, Dr. Sarah Tabrizi, the lead investigator in the Ionis trial, presented findings at the American Neurology Association (ANA) meeting. Much of the information presented was not new and you can read more about the findings from the Phase 1/2a study here.
An estimated 30,000 people in the United States have Huntington's Disease. Are you caring for a loved one with Huntington's? Find comfort in knowing that you are not alone by listening to the experiences of your fellow caregivers. You may find new ways to help your loved one manage and cope with the disease, as well as advice on how to balance the many responsibilities of being a caregiver.
Drs Rachel Harding and Tam Maiuri are taking a leap of faith to make discoveries in Huntington’s Disease (HD) research swift and open to all. They are publishing their lab notes on fundamental HD research online in real time, at the risk of losing credit for their work. As a result, they hope to speed the path of discovery to more effective HD treatments.
This video is not about Huntington's but about FTD, another brain disease. We offer it on our website because some FTD symptoms are similar to HD symptoms and because the video includes suggestions for coping with the disease that may be helpful to HD patients and families.
What's the most transformative thing that you can do for your brain today? Exercise! says neuroscientist Wendy Suzuki. Get inspired to go to the gym as Suzuki discusses the science of how working out boosts your mood and memory -- and protects your brain against neurodegenerative diseases like Alzheimer's.
Potential immunotherapies are showing some positive early results in clinical and preclinical tests, and may offer hope to treat Huntington’s disease, according to a recent review published in the journal Molecular Psychiatry.
The cause of Huntington’s disease has been known since 1993, but the physical structure of the healthy huntingtin protein proved difficult to discover until now. German scientists have now revealed the shape of the huntingtin protein for the first time. Although the structure of the mutant form of the protein was not investigated, this study provides an excellent platform to build upon and will boost drug development efforts.
A modified version of the genome-editing CRISPR-Cas9 system may prevent the production of faulty huntingtin protein, moving closer to treatment for Huntington’s disease.
Updates from day 3 of the Huntington’s Disease Therapeutics Conference: huntingtin protein - and lowering it
Blocking specific glutamate receptors was seen to improve cellular, motor, and cognitive skills in a mouse model of Huntington’s disease.
Exercise and physical activity may benefit patients with Huntington’s disease (HD), a new review study shows.
A letter to the HD community from Ionis Pharmaceuticals, Inc. and Roche announcing the initial results from the completed Phase 1/2a study of IONIS-HTTRx. (now known as “RG6042”) in people with Huntington disease (HD).
Ionis Pharmaceuticals, Inc. (NASDAQ: IONS), a leader in antisense therapeutics, today announced the presentation of positive top-line data from a completed Phase 1/2 study of IONIS-HTTRx (RG6042) in people with early stage Huntington's disease (HD) at the 13th Annual CHDI HD conference. The data demonstrate that IONIS-HTTRx (RG6042) is the first drug in development to lower the disease-causing protein in people
Updates from day 2 of the Huntington's Disease Therapeutics Conference focusing on DNA repair in HD.
Jeff and Ed report from the Huntington's Disease Therapeutics Conference - the biggest annual gathering of HD researchers.
New hints are emerging about the normal role of the gene that causes Huntington's disease. A recent report uses cutting edge techniques to study this question in cells growing in the lab. We'll help separate the fascinating new science from some scary-sounding headlines.
Rare Disease Day takes place on February 28, 2018. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases like Huntington's disease and their impact on patients' lives.
Scientists probing the reason why cancer is far less common in individuals with Huntington's disease have revealed that the gene responsible for the fatal brain condition produces a molecule that is deadly to cancer cells, Medical News Today says.