March 2008

Advocates and Regulators Come Together for AD Scientific Workshop

On March 13, ACT-AD, together with the Alzheimer’s Association and the Alzheimer’s Study Group, hosted Measures of Clinical Meaningfulness: An AD Ally/Scientific Workshop.  The workshop, which was the product of months of collaboration between ACT-AD, the FDA, AD researchers and other stakeholders, was well attended by representatives of the regulatory, patient advocacy and drug development communities.

ACT-AD achieved its primary goals for the workshop by stimulating an open discussion with select FDA leadership on the subject of clinical meaningfulness in new AD therapies. Key topics that were explored during the workshop include:

  • Current FDA Standards for Defining Clinical Meaningfulness in Alzheimer’s Disease Treatments
  • Issues and Challenges in the Context of the Current Standards for Defining Clinical Meaningfulness in Alzheimer’s Disease
  • Options and Alternatives for Defining Clinical Meaningfulness in Alzheimer’s Disease
  • Meaningful Changes as Viewed by the Clinician, Patient and Caregiver

It is clear from the workshop that a continued discussion with FDA on this and other important issues surrounding the review of Alzheimer’s therapies is necessary to ensure that more meaningful treatment options are made available to patients and their families in the future. However, the workshop succeeded in advancing the dialogue regarding how best to measure the clinical effectiveness of emerging therapies.

Click here to view a press release about the event. An in-depth policy report from the workshop will be made available to ACT-AD members in the coming weeks.

Release of Informational Alzheimer’s “Pocket” Films

On March 11, ACT-AD’s chairing organization, the Alliance for Aging Research, released a series of four short animated “pocket” films on Alzheimer’s disease.  The films are designed to explain the essence of Alzheimer’s disease and its public health implications in easy-to-understand terms. They run approximately two-three minutes each and are universally accessible—playable on iPods, cell phones, PDAs, laptops and DVD players.

The films were written and directed by David Shenk, author of The Forgetting, and are narrated by Emmy- and Tony-award winning actor David Hyde Pierce. They are intended to increase understanding of the disease, reduce stigma, help improve care, and strengthen public efforts to stop Alzheimer’s disease. If you would like more information on topics such as Alzheimer’s disease progression, the impact of the disease on society, the race for a cure, and resources for patients and families, these films may provide some answers. To view the series and to learn more about the project, please visit

New Coalition Member

ACT-AD is pleased to welcome its newest member, the American Health Assistance Foundation (AHAF).  AHAF is a 501(c)(3) organization that funds research seeking cures for Alzheimer’s disease, age-related macular degeneration and glaucoma,while providing the public with information about risk factors, preventative lifestyles, available treatments and coping strategies.

AHAF is one of America’s leading supporters of basic scientific investigations to better understand and find cures for Alzheimer’s disease, age-related macular degeneration and glaucoma. Founded in 1973, AHAF has awarded more than $82 million in research grants to some of the most prominent scientists at universities, hospitals and medical centers around the world. AHAF currently funds 103 research grants: 44 projects through Alzheimer’s Disease Research; 29 through National Glaucoma Research; 27 through Macular Degeneration Research; and 3 through the National Heart Foundation.  For more information about AHAF, please visit