New educational resource unveiled for Huntington’s patients, caregivers

More Than HD offers information on disease, treatment options, care

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by Mary Chapman |

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Neurocrine Biosciences is offering a new online educational resource called More Than HD that seeks to inspire and give hope to Huntington’s disease patients and their caregivers by helping them prepare for their journey with the disease.

“It was important for us at Neurocrine to create More Than HD as part of our ongoing commitment to the HD community,” Eiry W. Roberts, MD, Neurocrine’s chief medical officer, said in an email to Huntington’s Disease News. “This educational initiative aims to inspire hope and help individuals and their families move forward through their journey with HD, whether they are learning about what to expect with HD, researching treatment options for symptoms, such as chorea, or seeking information on how to support a loved one living with the disease.”

Huntington’s is a progressive neurodegenerative disease marked by motor, cognitive, and psychiatric issues. It’s thought to affect about 41,000 U.S. residents,  most of whom will develop chorea, which features involuntary, jerky movements that are believed to be driven, at least in part, by abnormally high levels of dopamine, a major brain chemical messenger, or neurotransmitter, involved in movement control.

Neurocrine’s Ingrezza (valbenazine) is an oral medication approved in the U.S. to ease chorea in adults with Huntington’s. Like other approved anti-chorea medications, Ingrezza is a VMAT2 inhibitor, meaning it blocks VMAT2, a protein involved in transporting and recycling neurotransmitters such as dopamine.

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Exploring More Than HD

The More Than HD website offers post-diagnosis information about the disease, about treatment options, and about caregiving, along with information on Huntington’s signs and symptoms, on identifying chorea, and on VMAT2 inhibitors as well as other treatment options for changes in mood, behavior, thoughts, and feelings.

The website also provides a guide to help patients talk to their healthcare provider about chorea and advice on creating a HD-friendly home, including switching to plastic or other unbreakable dishes, using non-spill cups and straws and weighted utensils and dishes with suction cups, and placing a bench or chair in the shower.

Patients and caregivers can also learn how to develop a care team and support system that’s tailored to their needs and that involves patient support organizations.

There’s also a downloadable brochure for patients and families on managing and understanding Huntington’s symptoms and its stages. It also offers information for caregivers on planning ahead and keeping insurance and other documents handy.

The website also offers information about caring for a loved one with Huntington’s that discusses the caregiver’s role, connecting with other caregivers, advocating for a patient, and how caregivers can care for themselves.

Visitors will also find a frequently asked questions page about the disease, chorea and other symptoms, and community support and resources.

The information “is meant to help those impacted by [Huntington’s disease] plan for what to do today to make the most of their tomorrows,” Roberts said. “We are proud to bring More Than HD to the [Huntington’s] community as an additional resource and remain committed to supporting families impacted by this progressive disease.”