Establishes a state frontotemporal degeneration registry

• Democratic8
• Republican1

◆ The sponsor's argument

Why Michelle Hinchey says this is needed

Frontotemporal Degeneration (FTD) affects hundreds of thousands of Amer- icans and is also the most common form of dementia in people under 60, but is one of the least known diseases of our time. Often first misdiag- nosed as a mental illness, Alzheimer's, or Parkinson's, it takes nearly four years, on average, for a person to get an accurate diagnosis due in part to the fact that there is very little research or funding allocated to the treatment, prevention or understanding of FTD. What is known is that FTD causes irreversible damage to the frontal and temporal lobes of the brain, which brings changes to personality, behav- ior and language. The effects of this form of dementia are felt, not only by the person inflicted, but by every family member, requiring full 24/7 care and a duration that spans nearly a decade, resulting in an economic burden that is almost twice that of Alzheimer's. A better understanding of this disease, including its prevalence, along with increased awareness among the public and the medical community at large, is needed if we are going to work to one day eradicate FTD, but to date, there is no focused data collection. This bill creates the first statewide FTD registry in the country which will allow for volun- tary tracking of all diagnoses of Frontotemporal Degeneration and other forms of dementia so that we can understand the full scope of this disease. This legislation will bolster awareness among the medical community helping to cut down on misdiagnoses, will create an advisory council to help guide the Department of Health on FTD and dementia related care, provide a more holistic picture of the current state of FTD and other dementias across New York, and set up a public resource guide through the Department of Health for those seeking help and support with an FTD diagnosis. In order to find a cure, we must first understand the disease. This bill is the first step in raising awareness and collecting the data that we need to save lives.

This is the sponsor's own case for the bill, quoted from their memorandum. It is not Agora's description of what the bill does.