Who we are...

The Medical Advisory Group (MAG) is an ad hoc committee of experts charged to examine issues related to the use of aducanumab (AduhelmTM) by persons with Down syndrome. The MAG was organized following the FDA's July 7, 2021 approval of the pharmaceutical firm Biogen's medication, aducanumab, for the treatment of Alzheimer's disease.

The ad hoc committee functions under the Clinical Health Care Committee of the NTG, chaired by Seth Keller, MD and Kathryn Service, NPN-BC, in accord with the NTG's Scientific Consultative Panel, chaired by Lucille Esralew, Ph.D.

 

Members of the Advisory Group are drawn from experts across the United States (and other countries) whose work and research with persons with Down syndrome affected by dementia and touches on the many facets of early detection and diagnosis, and interventions, treatments, and health management.  Members are also drawn from health policy, providers, and engaged family members, whose concerns are social care and applicable public policies and support practices.

The MAG recently issued an issues consensus statement on aducanumab and persons with Down syndrome, which can be sourced below.

                                                 See also:  Aduhelm & Down Syndrome Information

Documents, publications, and miscellanea
An Issues Consensus Statement -- Aducanumab and Persons with Down Syndrome: What Do We Do Now?
    A consensus statement encapsulating the key questions and issues related to the use of
    aducanumab by persons with Down syndrome

Aduhelm: Rush to Judgement?
  Published version of statement in Exceptional Parent (July 2021)

New Alzheimer’s Drug and Considerations for State I/DD Agencies: Aducanumab: Panacea or Risk for Adults with Down Syndrome 
  Virtual presentation on aducanumab and implications for state I/DD agencies to the
  Medical & Clinical Director's Work Group of the National Association of State Directors of
  Developmental Disabilities Services on August 4, 2021


Aducanumab: Panacea or Risk for Adults with Down Syndrome
  Virtual presentation on intellectual disability and possible application of aducanumab to
  the ACCSES organization on August 5, 2021

FAQ on Aduhelm and Intellectual Disability
  A FAQ is currently under development and will be posted shortly
EP version image_edited.jpg
Cover ACCSES presentation_edited.jpg