Huntington’s Disease Society of America (HDSA) Center of Excellence at UMass Chan
welcome!
Our center at UMass Chan and UMass Memorial provides care to patients in central and western Massachusetts, in partnership with Beth Israel Deaconess Medical Center. We look forward to working with you and your family in providing you with the care and resources you need.
What is Huntington's Disease (HD)?
Our DNA consists of thousands of genes which communicate and influence the workings of our bodies. In 1993 scientists identified a defect in the ‘Huntingtin’ gene. Everyone has the Huntingtin gene, however, individuals who carry the defective gene will develop Huntington’s Disease.
Huntington’s Disease is also known as a family disease due to its hereditary dissemination. Male and female children of parents with Huntington’s have a 50/50 percent chance of inheriting the defective gene. Symptoms are typically revealed during adulthood ranging from around 30 to 50 years of age.
Huntington’s Disease causes damage in the brain by impacting a person’s movement abilities which include chorea-involuntary movements, unsteady gait, slurred speech, difficulty swallowing, and weight loss; cognitive functions, thinking, forgetfulness, and impaired judgement; emotional wellness, changes to mood, emotions, causing anxiety, and depression.
There is no cure for Huntington’s disease or treatment to slow down its progression.
At UMass HSDA Center of Excellence, our comprehensive care team provides clinical support to patients with Huntington’s Disease by conducting assessments by a team of professionals including a movement disorders specialist, genetic counselor, social worker, speech-language pathologist, and nurse navigator.
Interdisciplinary clinic
Our clinic provides high-quality patient-centric care through a multidisciplinary approach to treating Huntington’s Disease.
You will have a supportive team to best assess and address your needs and concerns. Our team includes a fellowship-trained Movement Disorders neurologist, genetic counselor, nurse navigator, speech therapist, and social worker. We aim to have members of the team present during your initial evaluation and throughout your journey with Huntington’s Disease.
Our team also collaborates with other specialists and experts through consultation services for areas such as genetic testing, nutrition screening, rehabilitation therapies, palliative care, neuropsychology, and neuropsychiatry.
For additional information, please also review the Huntington’s Disease Society of America website, www.hdsa.org. They are a source of valuable information, resources, and support services.
We look forward to being a partner in your HD journey. Please do not hesitate to reach out with any questions or concerns.
Research
Our access to clinical trials allows patients to participate in trials with varying levels of involvement.
Anindita Deb, MD, specializes in neurodegenerative diseases and movement disorders such as Huntington’s Disease and Parkinson’s Disease.
We collaborate with Samuel Frank, MD, of Beth Israel Deaconess Medical Center, HSDA, Enroll-HD, and the Michael J. Fox Foundation trial finder to provide a variety of Huntington’s Disease clinical trial opportunities to our patients.
To learn more about our active clinical trials and studies, contact our research coordinators.
RESEARCH Resources
https://www.bidmc.org/research/research-by-department/neurology/laboratories/samuel-frank-laboratory
Conquering Diseases - Category
HD Research - Huntington's Disease Society of America (hdsa.org)
https://www.michaeljfox.org/trial-finder
Collaborative Clinical Trials and Study Projects through BIDMC, Samuel Frank Laboratory