Chronology of the NTG
NTG CHRONOLOGY
2010
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2010 – The NTG is organized following testimony at two Administration on Developmental Disabilities' public listening sessions in Orlando, Florida, and Detroit, Michigan, with help from AAIDD, UIC, and AADMD
2011
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2011 – President Obama signs the National Alzheimer's Project Act (NAPA)
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2011 – NTG attends the first meeting of the Advisory Council on Alzheimer's Research, Care, and Services
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2011 – First plenary meeting of NTG in June at AAIDD conference in St. Paul, Minnesota
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2011 – Second plenary meeting of NTG in November at AUCD conference in Arlington, Virginia
2012
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2012 -- NTG issues the 'My Thinker's Not Working' document and action plan
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2012 – The National Plan to Address Alzheimer's Disease, under NAPA, is issued
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2012 – NTG formalizes governance via an administrative ‘Steering Committee’
2013
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2013 – NTG issues the NTG-EDSD and Manual
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2013 – The first plan update to the National Plan, under NAPA, is issued
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2013 – NTG publishes ‘Guidelines for Structuring Community Care and Supports for People with Intellectual Disability Affected by Dementia’
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2013 – NTG publishes ‘Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disability’
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2013 – NTG develops an informal relationship with the Academy of Developmental Medicine and Dentistry
2014
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2014 – The second plan update to the National Plan, under NAPA, is issued
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2014 – NTG publishes ‘Guidelines for Dementia-Related Health Advocacy for Adults with Intellectual Disability and Dementia’
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2014 – NTG completes the National Core Curriculum on Dementia and Intellectual Disability and field-tests a two day workshop model
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2014 – First NTG national ‘conference’ within AADMD in Princeton, New Jersey
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2014 – NTG publishes ‘Viability of a dementia advocacy effort for adults with intellectual disability: using a national task group approach’ in a professional journal
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2014 – NTG completes an agreement with the American Academy on Developmental Medicine and Dentistry to become a formal 'committee' under the Academy's by-laws.
2015
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2015 – NTG begins to provide two-day workshops on dementia and intellectual disability across the US – along with a train-the-trainer day
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2015 – The third plan update to the National Plan, under NAPA, is issued
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2015 – Second NTG national ‘conference’ within AADMD in Los Angeles, California
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2015 – NTG publishes ‘Why do we need national guidelines for persons with intellectual disability and dementia?’ in a professional journal
2016
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2016 – NTG expands provision of two-day workshops on dementia and intellectual disability across the US – along with a train-the-trainer day
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2016 – The fourth plan update to the National Plan, under NAPA, is issued
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2016 – Third NTG national ‘conference’ is held within AADMD in Chicago, Illinois
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2016 – Agreement is reached with a Canadian-based consortium to pilot an adapted version of the NTG workshop in Canada
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2016 – The NTG-EDSD is selected as a core instrument within the national Down syndrome biomarkers study funded by NIH
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2016 – NTG is involved with aiding/providing workshops to several grantees within the Alzheimer’s Disease Initiative grant program under the Administration on Community Living
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2016 – NTG collaborating with the DS-MIG-USA in examining neuropathological regression among post-teen adults with Down syndrome
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2016 – NTG helps to plan and participates in the ‘International Summit on Dementia and Intellectual Disability’ held in Glasgow, Scotland, October 13-14, along with Stirling University's Dr. Karen Watchman
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2016 – NTG examines producing a NTG-EDSD 2.0; decides not to as there are too many extant language versions
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2016 -- NTG joins the LEAD Coalition in Washington, DC
2017
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2017 – Fourth NTG national 'conference' is held within AADMD in Houston, Texas
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2017 – NTG working with NDSS and the Alzheimer’s Association to produce a booklet on dementia and Down syndrome for families and other caregivers
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2017 – NTG decides to issue guidelines for the development and use of small community care settings for people with intellectual disability affected by dementia
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2017 – NTG continues to shadow the NAPA Federal Council and the National Plan updates to ensure adequate and appropriate inclusion of concerns of people with intellectual disability and their caregivers.
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2017 – NTG provides technical assistance, via a two-year contract, to the Seven Hills Rhode Island organization's ACL ADI dementia grant project
2018
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2018 – Sixth NTG national 'conference' is held within AADMD in Seattle, Washington
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2018 – NTG Co-Chair, Dr. Seth Keller, received 'Spirit of the NTG' award at Seattle conference
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2018 – NTG recognizes Prof. Roy I. Brown with 'Lifetime Achievement' award at Seattle Conference
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2018 – NTG participates as a partner with NDSS in first Adult Down Syndrome Summit in Arlington, Virginia
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2018 – NTG Co-Chair, Dr. Seth Keller, establishes the Intellectual Disability Special Interest Group within the American Academy of Neurology
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2018 – NTG joins the DS-Connect Consortium at NIH
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2018 – NTG's family advocacy directorate begins holding internet-based caregiver support groups
2019
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2019 – NTG participates as a partner with NDSS in the second Adult Down Syndrome Summit in Detroit, Michigan
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2019 – NTG recognizes Ms. Janet Miller with 'Spirit of the NTG' award at the Adult Down Syndrome Summit
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2019 – Seventh NTG national 'conference' is held within AADMD in Rochester, New York
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2019 – Agreement is signed with NTG Canada to share information and the NTG curriculum so workshops could be held in Canada
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2019 – NTG receives WITH Foundation grant to study use of SAFD instrument
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2019 – NTG Canada begins providing two-day and three-day workshops on dementia and intellectual disability
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2019 – NTG Co-Chair, Dr. Matthew P. Janicki, appointed to the federal Advisory Council on Alzheimer's Research, Care, and Services
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2019 – NTG family advocacy directorate develops a guide for on-line support group facilitators
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2019 – NTG partners with Temple University to undertake a proof-of-concept study of on-line support groups
2020
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2020 – NTG establishes it primary website at https://www.the-ntg.org
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2020 – NTG partners with US Down syndrome organizations to issue the first major Q&A on COVID-19 and Down syndrome
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2020 – NTG offers its first virtual two-day workshop due to COVID-19 on-site workshop cancellation
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2020 – NTG Co-Chair, Dr. Seth Keller, organizes a national campaign to modify restrictive hospital visitation policies
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2020 – NTG joins FNIA [Friends of the National Institute on Aging]
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2020 – NTG formalizes its status agreement with the AADMD via an amendment to its 2014 affiliative agreement
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2020 – NTG provides technical assistance, via a two-year contract, to the Hawaii Catholic Charities organization's ACL ADPI dementia grant project
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2020 – NTG partners with a number of national Down syndrome organizations to issue an updated Q&A on COVID-19 and Down syndrome
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2020 – NTG members participate in the AAIC 2020 Conference
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2020 – NTG partners with ACCSES and the University of Illinois at Chicago (UIC) on national survey of how COVID-19 is affecting providers of services
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2020 – NTG is a partner with the University of Illinois at Chicago on a CDC funded 5-year health brain initiative grant project
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2020 – NTG is incorporated as a not-for-profit organization under the laws of the State of Maine
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2020 – NTG's Evaluation Committee issues a report on the learning gains for persons taking the NTG workshops on dementia and ID and acknowledges that value of ADKS-ID instrument in measuring learning gains
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2020 – NTG, along with the UIC's Health Matters Program issues a report on a national survey of how COVID-19 has affected the nation's provider agencies
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2020 – NTG holds its last Steering Committee meeting on September 24th
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2020 – NTG holds is first major Board meeting as a not-for-profit corporation on October 21st
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2020 – NTG Board member Dr. Rick Rader is appointed to the National Council on Disability
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2020 – NTG collaborates with two GWEPS (at URI and VCU) to hold a 5 segment ECHO series on ID and dementia
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2020 – NTG produces a resource bibliography on COVID-19 and intellectual disability
2021
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2021 – NTG partners with US national Down syndrome organizations to issue the 'COVID-19 and Down Syndrome Resource'
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2021 – NTG signs a memorandum of understanding for collaborative activities with the National Down Syndrome Society
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2021 – NTG collaborates with two GWEPS (at URI and VCU) to hold a second 5 segment ECHO series on ID and dementia
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2021 – NTG's NTG-EDSD is recognized for its utility enabling recognition of MCI in a professional journal
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2021 – NTG is licensed and enabled to undertake charitable solicitations by the state of Maine
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2021 – NTG is recognized and listed in the 'Where Can I Find Help?' section on NIH's Alzheimers.gov website
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2021 – NTG completed its financial arrangement with the AADMD as a subsidiary for financial purposes
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2021 – NTG completed a two-year development project of the SAFD, funded by the WITH Foundation
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2021 – NTG issues, along with other organizations, a statement on the use of aducanumab by adults with Down syndrome
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2021 – NTG receives IRS 501(c)(3) tax exempt status as of July 30, 2021
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2021 – NTG is contracted by the University of Texas at Houston to provide trainings and state planning meetings in Texas
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2021 – NTG holds first international webinar on dementia biomarkers and emerging Alzheimer's medications
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2021 – NTG holds first annual meeting on October 21, 2021 - election of two new Board members
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2021 – NTG completes a two-year arrangement with ACL ADPI grantee Catholic Charities Hawaii to provide technical assistance and trainings
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2021 – NTG begins second year of a collaborative agreement with CDC's BOLD Act grantee at the University of Illinois at Chicago
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2021 – NTG participates in collaborative of US Down syndrome organizations to issue updated guide on COVID-19 and vaccines
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2021 – NTG begins a 5-year education and consultation project in conjunction with the University of Texas at Houston
2022
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2022 – NTG partners with US national Down syndrome organizations to submit comments to CMS rejecting a proposed process to limit access to Alzheimer's medications by neurological conditions
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2022 – NTG participates with Down syndrome organizations to issue final version of COVID-19 Advisory and Resources Guide
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2022 – NTG issues a seminal report on 'Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel’ in conjunction with the Lumind IDSC Foundation
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2022 – NTG and EASPD (Brussels, Belgium) jointly sponsor a webinar on the state of people with disabilities in the Ukraine as a result of the invasion by Russia
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2022 – NTG joins with US Down Syndrome Coalition to issue a commentary on the CMS National Coverage Determination on Medicare Coverage Policy for Monoclonal Antibodies Directed Against Amyloid for the Treatment of Alzheimer’s Disease
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2022 – NTG begins participation in an ACL ADPI grant to Fox Valley Senior Resource Network in Appleton, Wisconsin
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2022 – NTG submits nomination of Board member, Marianne Barbera, for the federal Advisory Council for the RAISE Act
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2022 – NTG receives a contract from the University of Texas at Houston to provide training and technical assistance to a statewide grant project on aging and developmental disabilities funded by the Texas Developmental Disabilities Council
2023
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2023 – NTG receives an additional contract from the University of Texas at Houston to provide training for law enforcement personnel as part of a statewide grant project on aging and developmental disabilities funded by the Texas Developmental Disabilities Council
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2023 – NTG partners with the LuMind IDSC Foundation to organize a working group of experts to arrive at a consensus statement on criteria and instrumentation for determining eligibility for access to prescriptive therapeutics for treating Alzheimer's disease as they become approved by the FDA for general use.
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