Huntington's is a disease many people know very little about.  Only 1 out of 10,000 people have the gene. And no assisted living facilities in Upstate New York offers the necessary specialized services to care for those patients. But soon, there will be. Cara Thomas shares more about a new program starting next year at the Sitrin Health Care Center.

UTICA, N.Y. -- Each year on August 24, Marie Clay and her daughter Laurie celebrate their husband and father's birthday. 

Phil Clay would have been 67 years old this year. He died 9 years ago -- after a difficult battle with Huntington's Disease. 

"Not many people have heard of this disease, but they've heard of Parkinson's, ALS and Alzheimer's. Imagine one person having all those symptoms at the same time. That's what Huntington's is," said Marie Clay.  

But their family's battle against HD isn't over yet. The genetic disease was passed down to their daughter Laurie and there's a 50 percent chance it could be passed on to her son as well. 

"The person loses the ability to move, to swallow, to speak and communicate, to go through typical thought processes so the need for long term care intervention is very evident," said Mark DePerno, the outreach coordinator for Sitrin's Neuro Unit.

In all of Upstate New York, there is not one facility which specializes in long term care for patients with Huntington's Disease. In the past, people affected would spend their final days in assisted living.

"They don't have the knowledge of how to care for Huntington's. It's not the same as a senior, or someone with dementia,"  Clay said.

To meet that need, Sitrin Health Care Center is renovating a new 32 bed unit for a neurodegenerative disease specialty program. Construction started Monday.  

"Twenty-four hour care will allow for those who are affected by this condition, often in the later stages, to have those specialty services. Physical therapy, occupational therapy, speech and language pathology, nursing care to ensure safety, as much independence as possible and quality of life," said DePerno.  

This facility will be the only one of its kind in Upstate New York for not only Huntington's Disease patients, but also those suffering from ALS. 

"It's a much needed unit for Huntington's families in not only New York state, but we're hoping that other states will follow what they're doing," said Clay.  

The program is set to begin in February 2016.