Current Initiatives

National Alzheimer’s Project

In January 2011 President Obama signed the National Alzheimer’s Project Act into law. This law authorizes the Office of the Secretary of Health and Human Services (HHS) to establish a National Alzheimer’s Project (or NAPA) in order to effectively treat and prevent Alzheimer’s disease and related dementias by the year 2025. In May of 2012 HHS released the first draft of The National Plan to Address Alzheimer’s Disease which lays out the strategy to achieve the goal of ending Alzheimer’s disease and the related dementias and details the specific actions and objectives that must be met in order to do so by 2025. As progress is made, The National Plan is updated annually by an advisory council with at least 22 members including employees of many federal agencies as well private organizations and family caregivers. The 3rd draft of the plan was released at the end of April 2014 and is available online here. Included in all drafts of the National Plan is the following:

In this plan, the term―Alzheimer’s disease or AD―refers to Alzheimer’s disease and related dementias, consistent with the approach Congress used in NAPA [referring to the bill signed in 2011]. Related dementias include frontotemporal, Lewy body, mixed, and vascular dementia. It is often difficult to distinguish between Alzheimer’s disease and other dementias in terms of clinical presentation and diagnosis. Some of the basic neurodegenerative processes have common pathways. People with dementia and their families face similar challenges in finding appropriate and necessary medical and supportive care. Unless otherwise noted, in this plan AD refers to these conditions collectively.

This is great news for the FTD community with great potential benefit for people coping with dementia in several of its various forms in addition to Alzheimer’s disease. AFTD has taken on the job of holding NAPA to the above definition and stands ready to help however we can.

On July 23rd, AFTD Program Manager, Matt Sharp addressed the NAPA advisory council at their quarterly public meeting in Washington DC. Matt introduced the council to AFTD and offered our expertise and assistance with the work of preparing the nation for the oncoming increase of Alzheimer’s and related diseases such as FTD. NAPA involves 24 federal agencies working with public and private partners to implement the actions and strategies described in The National Plan and achieve the final goal of preventing Alzheimer’s disease and related dementias by 2025. Click here to see Matt’s address to the council  (starts at 7:35 minutes). Matt has addressed the NAPA council at every quarterly meeting since July 2012 and has been accompanied several times by Pop Shenian, Chair of the AFTD board advocacy committee who also made comments to the council.

AFTD will continue to offer our expertise and guidance regarding the differences between Alzheimer’s and FTD as well as our assistance in solving common problems; but the more people the council hears from the better and we welcome your help. The quarterly meetings are open to the public and anyone may address the council directly during the public comments session, or in writing at any time. If you can attend a meeting, Matt and Pop would be thrilled to meet you in DC, but if you can’t please consider putting your thoughts in writing and sending them to HHS. Everything you need to know is available at the National Alzheimer’s Project Act website and please do not hesitate to contact us with any question you may have at info@theaftd.org. AFTD will continue to speak for the needs of those confronting FTD, but nobody can tell YOUR story as well as you can.

FTD and State Alzheimer’s and Related Disease Plans

AFTD wants our document “AFTD Guidance for State Alzheimer’s Plans” to inform all 50 U.S. states, but we need your help to get it into the right hands to have the greatest impact. At the first link below are some simple steps to follow to find out more about your state’s plan (or lack thereof) and who to contact to advocate for addressing the needs of people coping with FTD in your State Alzheimer’s and Related Disease Plan. You can also download a copy of the AFTD Guidance for State Alzheimer’s Plans from the second link.

If you are interested in advocating for FTD to be included in your State Alzheimer’s Plan the first step is to contact AFTD’s Program Manager, Matt Sharp, at 267-514-7221 or by email at msharp@theaftd.org. When possible, Matt will connect people in the same state to each other so you can work together. Use the lists below to determine whether or not your state has an Alzheimer’s plan.

A) The following 30 States (listed by the year plan was released) have an Alzheimer’s and Related Disease plan.

2007 – North Dakota
2008 – Iowa, Kentucky, Michigan, Vermont
2009 – Illinois, Louisiana, New York, Oklahoma, South Carolina, Tennessee
2010 – Colorado, Montana, Texas
2011 – Arkansas, California, Minnesota, Virginia, West Virginia
2012 – Maine, Massachusetts, Oregon, Utah
2013 – Florida, Idaho, Indiana, Maryland, New Mexico, Nevada, Rhode Island

B) The following 13 states (listed alphabetically) & Washington DC are developing a plan:  Alaska, Arizona, Delaware, Hawaii, Mississippi, Nebraska, New Hampshire, New Jersey, North Carolina, Ohio, Pennsylvania, Rhode Island and Wisconsin

C) The following 7 states do not have a state plan and are not actively developing one Connecticut, Georgia, Kansas, Montana, South Dakota, Washington and Wyoming

You can download a copy of simple steps to take to ensure FTD is included in your State Alzheimer’s and related disease plan here

To download a copy of “AFTD Guidance for State Alzheimer’s Plans” click here