Who we are...
The Medical Advisory Group (MAG) is an ad hoc committee of experts who were originally charged to examine issues related to the use of aducanumab (Aduhelm™) 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 group provides scientific advice to the NTG and is currently focusing on consulting on newly emerging FDA approved Alzheimer's therapeutics.
The MAG is chaired by Seth Keller, MD and Kathryn Service, NPN-BC, in accord with the NTG's Scientific Consultative Panel.
Members of the Medical 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 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.
In 2020, the MAG issued a consensus statement on aducanumab and persons with Down syndrome, which can be sourced below and keeps tabs on the issues stemming from the approval by the FDA of new Alzheimer's therapeutics.
In 2023, the MAG was responsible for organizing an 'in conjunction with 'meeting embedded within the 2023 Annual Conference of the American Academy of Neurology. The meeting held in Boston, Massachusetts, focused on a discussion of the new FDA approved AD therapeutics and assessments of people with intellectual disability. A summary of the meeting can be found here.
See also: Aduhelm & Down Syndrome Information
MAG Related Activities & Connections
Connections with the American Academy of Neurology
Dr. Seth M. Keller, the founder and past Chair of the Adults with Intellectual and Developmental Disabilities Section, is active with working with colleagues in the AAN to promote the interest among neurologists of issues facing adults with intellectual disabilities as they age and present with neuropathologies.
Such advocacy continues within the current leadership of the Section. The current Chair of the Section, Bhooma Aravamuthan, MD, DPhil, of the Washington University (in St. Louis) School of Medicine, recently advised the AAN of the Section's recommendation that the AAN consider programming on neurodevelopmental disabilities as an integral part of the AAN Annual Meeting offerings. Such programming might include:
1. A course on the lifelong manifestations of childhood onset neurologic conditions, and the importance of neurologist involvement across the lifespan.
2. Incorporation of childhood-onset conditions when discussing other topics (e.g. ensuring that Down syndrome is discussed explicitly when talking about Alzheimer’s disease).
3. A course on how to neurologically re-evaluate adults with childhood-onset conditions (e.g. many adults with neurodevelopmental disabilities have not had the genetic evaluations current guidelines mandate; others may have been misdiagnosed in childhood but still carry that label unquestioned throughout their lifespan).
Connections with the American Academy of Developmental Medicine and Dentistry
Dr. Seth M. Keller, a past-President of the AADMD, is also the NTG's Board representative to the Board of the AADMD. In this role he is the liaison to the experts within the AADMD and connects our two organizations on issues of common interest. This was evident during the COVID-19 pandemic when we collaborated on advisories on health issues related to the virus and its effects. AADMD members are also drawn upon to consult of orphan or unique conditions found to be present in adults with intellectual and developmental disabilities. The AADMD is also the MAG's key source of information on oral health issues.
MAG Related Publications & Documents
NTG's FAQ on aducanumab and Down syndrome
A comprehensive FAQ issued by the NTG's Medical Advisory Group on questions that were raised about Biogen's new medication for treating Alzheimer's disease still has relevance even though Biogen has withdrawn Aduhelm from production. "We are glad to make this available to families and providers who have questions and concerns about the use of this new medication," said Dr. Seth Keller, the MAG leader.