March 2016


Save the Date for ACT-AD’s Ninth Annual FDA/AD Allies Meeting/November 16

Mark your calendars! ACT-AD’s Ninth Annual FDA/AD Allies Meeting is set for Wednesday, November 16, 2016, at the Bethesda North Marriott Hotel and Conference Center (5701 Marinelli Road, North Bethesda, Maryland, 20852). We’ll be posting additional information over the next few months, so be sure to check for updates in our upcoming newsletters. You can also send an email to Cynthia Bens.

ACT-AD Submits Letter Calling for Increased Funding for FDA

This month ACT-AD submitted a letter to the U.S. House and Senate Appropriations Subcommittees on Agriculture, Rural Development, Food and Drug Administration, and Related Agencies requesting a $120 million increase in appropriated funding for the U.S. Food and Drug Administration for fiscal year 2017. This would increase funding from $2.73 billion in FY16 to $2.85 billion in FY17. Read the letter here. 

ACT-AD’s Bens to Speak at CDER Event on March 31

ACT-AD Executive Director Cynthia Bens will be participating in a March 31 public workshop sponsored by the FDA’s Center for Drug Evaluation and Research (CDER) titled Navigating CDER: What You Should Know for Effective Engagement at the FDA’s White Oak campus. This event will educate on how advocacy groups can more effectively engage with CDER. To find out more, please go here.

AHRQ Releases New Report on Dementia and Nonpharmacologic Interventions

The Agency for Healthcare Research and Quality (AHRQ) has released a new report called Nonpharmacologic Interventions for Agitation and Aggression in Dementia. The purpose of the report is to “to assess the efficacy, comparative effectiveness, and adverse effects of nonpharmacologic interventions for agitation and aggression in individuals with dementia.” To find out what experts learned, read the report here. 

Researchers Say PET Scans Can Track Progressive Stages of AD for the First Time

Researchers say they have for the first time found that PET scans can track AD’s progressive stages in cognitively normal adults. Published in the journal Neuron, the findings are being touted as an important step forward in early diagnosis of Alzheimer’s disease. Read more about the study here.

Upcoming PBS Special Focuses on Alzheimer’s Disease

On April 13 PBS will debut a special called Can Alzheimer’s Be Stopped? The program takes an indepth look at the disease as it shares the insights of the investigators who are working to find a cure. It also tells the stories of those who live with the condition, while spotlighting the clinical trials that are providing valuable information for researchers. To learn more, go here. 

FDA Issues Draft Guidance Request on Neurological Devices

The FDA has issued a draft guidance request for its document called Clinical Considerations for Investigational Device Exemption (IDEs) for Neurological Devices Targeting Disease Progression and Clinical Outcomes. According to the FDA, “the draft guidance is intended to assist Industry and FDA staff in considering the benefits and risks of medical devices that target either the cause or progression of a disorder such as Alzheimer’s, Parkinson’s or Primary Dystonia, rather than their symptoms.” Comments are being accepted through June 6, 2016. You can find the draft guidance by going to and searching for docket number FDA-2016-D-0539.

NIH Launches Consortium to Study Vascular Links to AD

The National Institutes of Health has launched the Molecular Mechanisms of the Vascular Etiology of Alzheimer’s Disease (M²OVE-AD) Consortium to help gain a better understanding of the connections between the vascular system and Alzheimer’s disease. The program “brings together over a dozen research teams working on five complementary projects. Harnessing the power of new molecular technologies and big data analytics, the teams will make biological datasets available to the wider research community.” For more information, check out the NIH’s page. 

CIBR Medical Technology Showcase Set for April 12

The Coalition for Imaging and Bioengineering Research (CIBR) holds its Seventh Annual Medical Technology Showcase: Collaborating to Enhance Patient Care Through Advances in Biomedical Imaging on April 12 from 5-7 p.m. in the Kennedy Caucus Room, 325 Russell Senate Office Building, Washington, D.C. The event will educate attendees on how patient care, from detection to diagnosis and treatment, is impacted by imaging technology. Learn more here.

New Dementia Care Plan Tool Launches

A new online tool that assists individuals in finding support to help them care for loved ones with dementia has launched. Using the tool, a person takes a survey. Through the results of this survey, the site then offers a list of available resources that would best fit that person’s needs. To see the tool, go here.

New Film Looks at a Condition Called PseudoBulbar Affect

A new film titled Beyond Laughter & Tears is the first-ever documentary to take an indepth look at the lives of those living with PseudoBulbar Affect (PBA). This condition causes uncontrollable bursts of laughing and/or crying in those with certain neurologic conditions or brain injuries. It affects an estimated two million people in the U.S. To learn more about the film, please go here.