NU38DD000004
Cooperative Agreement
Overview
Grant Description
Implementing evidence-based health promotion programs for Tourette syndrome (TS) - Tourette syndrome (TS) is a complex neurodevelopmental disorder characterized by involuntary motor and vocal tics.
1 in 50 school children ages 5-14 has TS or another persistent tic disorder.
The Centers for Disease Control and Prevention (CDC) estimates that 50% of children with TS go undiagnosed.
Furthermore, five in six children with TS will have a neuropsychiatric co-occurring condition, including Attention-Deficit/Hyperactivity Disorder (ADHD) and Obsessive-Compulsive Disorder (OCD).
According to the Tourette Association of America (TAA)’s 2022 Impact Survey, 50% of children with TS have felt discriminated against and 23% reported they had considered suicide; additionally, 30% of caregivers struggle to cover the high cost of medical and educational services needed for their child.
There are many barriers that exist for individuals with TS and their families in seeking quality medical care and educational support.
Evaluating and treating TS is complex due to the differences in symptoms and co-occurring conditions between individuals.
Thus, it is essential to increase awareness and understanding among families, communities, healthcare providers, and educators of how TS and related co-occurring conditions can impact all areas of life.
The National Tourette Association of America (TAA) is currently in its twentieth year of partnership with the CDC under the Implementing Evidence-Based Health Promotion Programs for Children with TS model and is applying for continued partnership under Category B: Implementing Evidence-Based Health Promotion Programs for TS.
Founded in 1972 in Bayside, New York, the TAA is dedicated to making life better for those affected by Tourette syndrome and tic disorders.
As the premier nationwide organization serving this community, TAA works to raise awareness, fund research, and provide ongoing support.
Through this partnership, the TAA will continue to provide evidence-based information, resources, and services to individuals with TS, their families/communities, as well as strengthen capacity among healthcare providers and educators to support the needs of persons with TS as well as individuals underserved by TS resources/supports.
TAA will continue to add to an extensive collection of professional education and outreach programs developed and implemented during the previous twentieth years of this partnership.
TAA will focus on building capacity and providing constituent-informed programming and will monitor and evaluate program implementation to ensure that outcomes are being met for continuous program improvement and are addressing racial/ethnic and geographic disparities.
Proposed activities aim to increase knowledge of TS symptoms, diagnosis, and treatment among individuals with TS, healthcare, educators; increase satisfaction among the TS community that TAA resources, tools, and supports meets their needs; and increase capacity of healthcare providers and educators to provide appropriate supports for individuals with TS.
TAA recognizes that reinforcing local and national linkages between TAA, TS Centers of Excellence, professional organizations, and the TS community can amplify the program’s reach and efficacy.
The TAA will use evidence-based approaches and communication channels to reach populations of focus, including individuals from racial/ethnic communities underserved by TS resources and supports.
TAA aims to improve the health and wellbeing of all persons with TS, and better equip families, communities, healthcare providers, and educators to support individuals with TS and improve overall quality of life.
1 in 50 school children ages 5-14 has TS or another persistent tic disorder.
The Centers for Disease Control and Prevention (CDC) estimates that 50% of children with TS go undiagnosed.
Furthermore, five in six children with TS will have a neuropsychiatric co-occurring condition, including Attention-Deficit/Hyperactivity Disorder (ADHD) and Obsessive-Compulsive Disorder (OCD).
According to the Tourette Association of America (TAA)’s 2022 Impact Survey, 50% of children with TS have felt discriminated against and 23% reported they had considered suicide; additionally, 30% of caregivers struggle to cover the high cost of medical and educational services needed for their child.
There are many barriers that exist for individuals with TS and their families in seeking quality medical care and educational support.
Evaluating and treating TS is complex due to the differences in symptoms and co-occurring conditions between individuals.
Thus, it is essential to increase awareness and understanding among families, communities, healthcare providers, and educators of how TS and related co-occurring conditions can impact all areas of life.
The National Tourette Association of America (TAA) is currently in its twentieth year of partnership with the CDC under the Implementing Evidence-Based Health Promotion Programs for Children with TS model and is applying for continued partnership under Category B: Implementing Evidence-Based Health Promotion Programs for TS.
Founded in 1972 in Bayside, New York, the TAA is dedicated to making life better for those affected by Tourette syndrome and tic disorders.
As the premier nationwide organization serving this community, TAA works to raise awareness, fund research, and provide ongoing support.
Through this partnership, the TAA will continue to provide evidence-based information, resources, and services to individuals with TS, their families/communities, as well as strengthen capacity among healthcare providers and educators to support the needs of persons with TS as well as individuals underserved by TS resources/supports.
TAA will continue to add to an extensive collection of professional education and outreach programs developed and implemented during the previous twentieth years of this partnership.
TAA will focus on building capacity and providing constituent-informed programming and will monitor and evaluate program implementation to ensure that outcomes are being met for continuous program improvement and are addressing racial/ethnic and geographic disparities.
Proposed activities aim to increase knowledge of TS symptoms, diagnosis, and treatment among individuals with TS, healthcare, educators; increase satisfaction among the TS community that TAA resources, tools, and supports meets their needs; and increase capacity of healthcare providers and educators to provide appropriate supports for individuals with TS.
TAA recognizes that reinforcing local and national linkages between TAA, TS Centers of Excellence, professional organizations, and the TS community can amplify the program’s reach and efficacy.
The TAA will use evidence-based approaches and communication channels to reach populations of focus, including individuals from racial/ethnic communities underserved by TS resources and supports.
TAA aims to improve the health and wellbeing of all persons with TS, and better equip families, communities, healthcare providers, and educators to support individuals with TS and improve overall quality of life.
Awardee
Funding Goals
EQUITABLY PROTECTING HEALTH, SAFETY, AND SECURITY FUNDING OPPORTUNITY GOAL(S) STRENGTHEN SOCIAL WELL-BEING, EQUITY AND ECONOMIC RESILIENCE (HHS STRATEGIC GOAL) PROTECT AND STRENGTHEN EQUITABLE ACCESS TO HIGH QUALITY AND AFFORDABLE HEALTHCARE (HHS STRATEGIC GOAL) SAFEGUARD AND IMPROVE NATIONAL AND GLOBAL HEALTH CONDITIONS AND OUTCOMES (HHS STRATEGIC GOAL) RESTORE TRUST AND ACCELERATE ADVANCEMENTS IN SCIENCE AND RESEARCH FOR ALL (HHS STRATEGIC GOAL) ADVANCE STRATEGIC MANAGEMENT TO BUILD TRUST, TRANSPARENCY, AND ACCOUNTABILITY (HHS STRATEGIC GOAL) MAINTAIN AND BUILD A DIVERSE AND CUTTING-EDGE PUBLIC HEALTH WORKFORCE (CDC CORE CAPABILITY) DEVELOP AND DEPLOY WORLD-CLASS DATA AND ANALYTICS (CDC CORE CAPABILITY) ENSURE STATE-OF-THE-ART LABORATORIES IN SCIENCE, QUALITY, AND SAFETY (CDC CORE CAPABILITY) RESPOND QUICKLY TO OUTBREAKS AT THEIR SOURCE (CDC CORE CAPABILITY) BUILD ON STRONG GLOBAL CAPACITY DOMESTIC PREPAREDNESS (CDC CORE CAPABILITY)
Grant Program (CFDA)
Awarding Agency
Place of Performance
New York
United States
Geographic Scope
State-Wide
Tourette Association Of America was awarded
Cooperative Agreement NU38DD000004
worth $1,100,000
from National Center on Birth Defects and Developmental Disabilities in September 2024 with work to be completed primarily in New York United States.
The grant
has a duration of 5 years and
was awarded through assistance program 93.073 Birth Defects and Developmental Disabilities - Prevention and Surveillance.
The Cooperative Agreement was awarded through grant opportunity Implementing Evidence-Based Health Promotion Programs for Attention-Deficit Hyperactivity Disorder (ADHD) or Tourette Syndrome (TS).
Status
(Ongoing)
Last Modified 8/20/24
Period of Performance
9/1/24
Start Date
8/31/29
End Date
Funding Split
$1.1M
Federal Obligation
$0.0
Non-Federal Obligation
$1.1M
Total Obligated
Activity Timeline
Transaction History
Modifications to NU38DD000004
Additional Detail
Award ID FAIN
NU38DD000004
SAI Number
NU38DD000004-115084687
Award ID URI
SAI UNAVAILABLE
Awardee Classifications
Nonprofit With 501(c)(3) IRS Status (Other Than An Institution Of Higher Education)
Awarding Office
75CDC1 CDC OFFICE OF FINANCIAL RESOURCES
Funding Office
75CUB0 CDC NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES
Awardee UEI
JEU6RF4CY9J9
Awardee CAGE
4DHS5
Performance District
NY-90
Senators
Kirsten Gillibrand
Charles Schumer
Charles Schumer
Modified: 8/20/24