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 joins the Component B aspect of the CDC's Healthy Brain Initiative being undertaken at the University of Illinois Chicago to promote brain health in the intellectual disability community.
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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 Board authorizes the creation of its first staff position and hires Ms. Kathryn Pears as its first Director of Operations
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2023 – NTG continues work with the Component B project being undertaken at the University of Illinois Chicago to promote brain health in the intellectual disability community as part of the CDC's Healthy Brain Initiative
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2023 – NTG issues advisory on over-medication and older adults with intellectual disabilities
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2023 – NTG engages the services of a professional accountancy to manage its financial affairs
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2023 – NTG issues advisory on supporting small dementia care group homes as part of the CMS "Settings Rule"
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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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2023 – NTG's Family Supports Group completed a national survey of how families best access information on dementia and intellectual disabilities.
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2023 – NTG participates in the NDSS's annual Hill Education conference and efforts to educate Congressional staffers on issues related to Down syndrome.
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2023 – NTG issues, together with the LuMind IDSC Foundation, an advisory ("Adapting Eligibility Criteria for Prescribing FDA Approved Anti-Amyloid Immunotherapeutics for Adults with Down Syndrome with Early-Stage Alzheimer’s Dementia") for adapting prescribing criteria for increasing eligibility for use of the FDA approved anti-amyloid therapeutics for treating early stage Alzheimer's disease.
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2023 – NTG begins work on producing an ID-oriented companion to the Gerontological Society of America's KAERS dementia care manual ('Kickstart the conversation, Assess for cognitive impairment, Evaluate for dementia, Refer for community resources') to include adaptations for issues affecting aging people with intellectual disabilities.
- 2023 -- NTG files comments and recommendations to the National Institute on Aging related to its proposed new rating system for criteria for diagnosing Alzheimer's diease.
- 2023 - NTG's Family Support Group begins planning for holding a family-oriented family informational series of webinars in 2024, based upon the results of its national family needs survey.
- 2023 - NTG participates at the CDC sponsored workshop, 'Engaging Diverse and Inclusive Audiences with The Healthy Brain Initiative Road Map', held at the annual confernce of the Gerontological Society of America (Tampa, Florida)
- 2023 - NTG collaborates with the LuMind IDSC Foundation in forming a working group on identifying key elements associated with registering adults with Down syndrome on CMS' registry for access to anti-amyloid treatment medications.
- 2023 - NTG completes preliminary work on the Gerontological Society of America's companion on intellectual disability to its KAER dementia care manual.
2024
- 2024 - NTG Family Support Program announces the NTG's new Family Informational webinar series (to run from February to April).
- 2024 - NTG participates on annual meeting of the DSAIA in Dallas, Texas
- 2024 - NTG participates in the 2024 conference of Alzheimer's Disease International in Krakow, Poland, with presentations of Alzheimer's disease treatment medication prescribing equivalencies and on the NTG's support group program.