Advocacy

“I was asked so often ‘What is FTD?’ that I wanted the whole world to know. I encourage volunteers to help raise the profile of this disorder from coast to coast in Canada and the US ,” Louise O’Connor, Ottawa Canada.

Accomplishing AFTD’s Mission requires advocacy – speaking out about patients and families needs, hopes and successes.

Add your voice to our campaign to educate others about FTD, improve policies and resources for patients and families, and intensify research and development for treatments and a cure.

Join the Grassroots Advocacy Network

Powerful movements are built on grassroots outreach. Your personal contacts, letters and stories fuel the momentum. AFTD is connecting a network of people across the US and Canada who will take action to change the future of FTD.

Caregivers, medical professionals, public officials, and community service providers and friend – - we need everyone to join the network!

Current Initiatives

On Tuesday, May 15, 2012, the Department of Health and Human Services released a plan to fight Alzheimer’s disease with some specific goals to be reached by 2025.  Included in that plan was 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. 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 in that they will potentially benefit from this plan as well as Alzheimer’s patients.   To read the full plan, click here.

On July 23rd, AFTD Program Coordinator, Matt Sharp addressed the advisory council for the National Plan to Address Alzheimer’s disease in Washington DC to introduce the council to AFTD and offer our expertise and assistance with The National Alzheimer’s Project Act (NAPA). NAPA is a major federal initiative to help prepare the nation for the oncoming increase of Alzheimer’s and related diseases such as FTD. The project involves 24 federal agencies working with public and private partners to achieve the goal of preventing Alzheimer’s disease by 2025. Click here to see Matt’s address to the council  (starts at 7:35 minutes). For more information on NAPA and the National Plan to Address Alzheimer’s disease, click here.

Tools and Resources

You’re not alone in your advocacy efforts. AFTD will provide you with ideas, materials and tools to make it easy. Watch this section for how to find your elected representatives, sample letters, tips and information that will help you to make your voice heard.

Use the links at the right for more information about these opportunities.