On March 3 AFTD Ambassador Corey Esannason met with staff from New York State Senator Andrea Stewart-Cousins’ office. Corey was inspired to arrange the visit after attending the New York Alzheimer’s Impact Movement (AIM) chapter’s state policy meeting.

The term Alzheimer’s disease and related dementias, or ADRD, is often used in legislation and policy as a catchall for neurodegenerative diseases that cause dementia.

However, as Corey realized during the AIM policy meeting, the “related dementias” are usually undefined, and many people, including legislators, never ask the question that occurred to Corey: how does this apply to FTD?

Corey took it upon herself to inform and educate her state senator, who happens to be the State Senate Majority Leader; amplifying the impact of her visit. She was invited to meet with the senator’s legislative fellow, Joshua Marcil. Meeting with staff is the norm and to be expected; it is not a reflection of the importance of one’s request or interest.

Corey prepared for her meeting by sending Mr. Marcil infographics from AFTD that outline the difference between FTD and Alzheimer’s and to summarize the economic impact of FTD on families. She also prepared by doing research to understand what AIM’s policy priorities are and how they apply to FTD.

Corey put folders together for the meeting; they included AFTD booklets and a pamphlet, a resource sheet, and a copy of the economic burden study AFTD published in 2017 with Dr. James Galvin. Being able to present this folder to Mr. Marcil and giving him an extra to pass along to the senator or others in his office was a huge win. Material for a “leave behind” folder is available from AFTD for anyone willing to do this type of advocacy work, and we are happy to help anyone prepare for a meeting like this.

Corey started the meeting by introducing herself and her connection to FTD and AFTD. Telling your story about how FTD has impacted you is key. Your personal experience makes you an expert and gives you all the authority you need to help a senator, or any elected official, understand FTD. Mr. Marcil had read the information Corey sent and was ready with questions. He was curious about the number of people with FTD in the state and its difference in impact from Alzheimer’s disease.

While hard data on the number of people with FTD in New York (or any state) is lacking, Corey was able to refer to the economic burden study to show the overall impact of FTD in comparison to Alzheimer’s. She further explained that not all dementia is Alzheimer’s and showed how FTD is very different, offering examples and a brief disease overview. Corey talked about the need to include FTD and other “related dementias” in planning the state budget and funding for dementia. She ended the meeting by thanking Mr. Marcil for his time and the senate leader for her past support for legislation and funding for dementia care in New York.

The meeting lasted 25 minutes, and Corey followed up with a thank you email and links to more information on the subjects she discussed with Mr. Marcil.

AFTD is working to build the capacity and resources to help more people do the kind of advocacy work Corey did, but educating and raising awareness of state legislators is critical and a necessary first step for any advocacy. It is also something you can do now. Partnering with advocacy groups like AIM, who share a common interest in dementia-related issues, is a great way to start. AFTD is ready and eager to help and support you in this work as best we can.

Anyone with an interest in visiting their elected official can contact AFTD Advocacy Manager Matt Sharp for support.