National Down Syndrome Society

The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome

aka NDSS   |   New York, NY   |  www.ndss.org

Mission

The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

Notes from the nonprofit

We achieve our mission by: -Developing and disseminating accurate and comprehensive educational materials and programs. -Shaping and advocating for improved public policy, increased public resources and services for people with Down syndrome. -Raising awareness and dispensing positive messages about the accomplishments of individuals with Down syndrome via national media and public events, such as the Buddy Walk. -Working in partnership with our 380 affiliates and other support organizations.

Ruling year info

1979

President & CEO

Ms. Kandi Pickard

Main address

8 East 41st Street 8th Floor

New York, NY 10017 USA

Show more contact info

EIN

13-2992567

NTEE code info

Down's Syndrome (G25)

Disabled Persons' Rights (R23)

Public, Society Benefit - Multipurpose and Other N.E.C. (W99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The National Down Syndrome Society (NDSS) was founded in 1979 to provide support and resources to parents of individuals with Down syndrome. More than 40 years later, there is still a great need to advocate for and support individuals with Down syndrome, their families and caregivers. NDSS works to address this need through our programs, initiatives and activities that address the entire lifespan - from birth to end of life. As the leading human rights organization for all individuals with Down syndrome, NDSS also works to advance laws and policies to promote the rights of our community and ensure their access to services and opportunities to live full and rewarding lives.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Resources and Support

NDSS is committed to providing individuals with Down syndrome, their families, caregivers and the public with information, resources and support. We are proud to work with a network of more than 300 local Down syndrome organizations across the country to support the community. Through our helpline and info email, NDSS answers more than 5,000 requests for information each year, responding to questions from parents, professionals, self-advocates and other interested individuals. NDSS provides information on a variety of topics related to Down syndrome through our resources and website and publishes guides and information brochures in both English and Spanish. Our publications provide comprehensive information across the lifespan of individuals with Down syndrome, from birth to end of life.

Population(s) Served

NDSS’ National Advocacy & Public Policy Center (NAPPC) advocates for federal, state and local policies that positively impact all people with Down syndrome across the country. Through our grassroots advocacy programs, the NAPPC works with Congress and other federal agencies, as well as state and local officials, to develop and improve laws, regulations and policies supporting people with Down syndrome and their families. NDSS also trains parents, self-advocates and others to advocate on local, state and national levels. Our comprehensive legislative agenda is centered on five important areas across the lifespan: healthcare & research, education, economic self-sufficiency, community integration and employment. These priorities have been shaped by self-advocates, families, affiliate leaders and other stakeholders under the direction of the NDSS Board of Directors.

Population(s) Served

The Down syndrome community is the heart of NDSS. Our community engagement events and activities serve to connect individuals and families, celebrate our loved ones with Down syndrome and raise awareness and acceptance among the general public. Started in 1995, the National Buddy Walk® Program promotes acceptance and inclusion of people with Down syndrome and raises funds for local and national organizations that support people with Down syndrome and their families. Each year, hundreds of Buddy Walk® events take place across the U.S. and in several countries around the world. Additionally, NDSS hosts an annual gala, golf outing, virtual Racing for 3.21 for World Down Syndrome Day event and Run for 3.21 relay. We also support participants in marathons and other sport and wellness events through our Athlete Ambassador Program.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

NDSS' mailing list is a database comprised of over 50,000 e-mails. Weekly communications are sent to our diverse group of Parents, Caregivers, Families, Friends, and Self Advocates to remain informed

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The National Down Syndrome Society (NDSS) envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their full potential and become valued members of welcoming communities.

NDSS supports and advocates for the Down syndrome community by focusing on three key areas of programming: Resources & Support, Policy & Advocacy, and Community Engagement. Within these focus areas NDSS engages in various activities, events and programs.

NDSS is proud to work with a network of more than 300 local Down syndrome organizations across the country to support the community with resources and support. Through our helpline and info email, NDSS answers more than 5,000 requests for information each year, responding to questions from parents, professionals, self-advocates and other interested individuals. NDSS provides information on a variety of topics related to Down syndrome through our resources and website and publishes guides and information brochures in both English and Spanish. Our publications provide comprehensive information across the lifespan of individuals with Down syndrome, from birth to end of life.

NDSS’ National Advocacy & Public Policy Center (NAPPC) advocates for federal, state and local policies that positively impact all people with Down syndrome across the country. Through our grassroots advocacy programs, the NAPPC works with Congress and other federal agencies, as well as state and local officials, to develop and improve laws, regulations and policies supporting people with Down syndrome and their families. NDSS also trains parents, self-advocates and others to advocate on local, state and national levels. Our comprehensive legislative agenda is centered on five important areas across the lifespan: healthcare & research, education, economic self-sufficiency, community integration and employment. These priorities have been shaped by self-advocates, families, affiliate leaders and other stakeholders under the direction of the NDSS Board of Directors.

The Down syndrome community is the heart of NDSS. Our community engagement events and activities serve to connect individuals and families, celebrate our loved ones with Down syndrome and raise awareness and acceptance among the general public. Started in 1995, the National Buddy Walk® Program promotes acceptance and inclusion of people with Down syndrome and raises funds for local and national organizations that support people with Down syndrome and their families. Each year, hundreds of Buddy Walk® events take place across the U.S. and in several countries around the world. Additionally, NDSS hosts an annual gala, golf outing, virtual Racing for 3.21 for World Down Syndrome Day event and Run for 3.21 relay. We also support participants in marathons and other sport and wellness events through our Athlete Ambassador Program.

NDSS has more than 40 years of experience supporting the Down syndrome community. Our affiliation with a network of 300+ Down syndrome organizations and groups worldwide helps us further our mission and ensure we are meeting the broad needs of the community.

NDSS is supported by a strong board of directors, an experienced staff and a loyal community of supporters. Additionally, we work closely with experts and professionals who consult and advise as we develop and disseminate new resources to support individuals with Down syndrome, their families and caregivers.

Over the past year NDSS has made significant progress in fulfilling our mission.
• Our COVID-19 resource list has provided crucial information to the community including: a general factsheet, our statement against treatment discrimination, guidance on hospitalization, tips for navigating education and employment, a Q & A created by NDSS and a national Down syndrome consortium, and more.
• Our New & Expectant Parent guide has been updated to continue to provide parents who have just received a diagnosis a comprehensive, up to date overview of Down syndrome and critical information on how to support their child.
• The NDSS Inclusive Education team has provided more than 280 hours of direct, no-cost support to students with Down syndrome, guiding families and schools through the creation of Individualized Education Plans (IEP) to ensure they can meet their educational goals.
• The #DSWORKS® program has recruited and supported 40 corporate employers in providing work opportunities to individuals with Down syndrome and provided webinars and resources to support hundreds of individuals through the process of seeking, securing and maintaining meaningful employment.
• Incorporating the voices of experts and individuals living with Down syndrome, our Virtual Adult Summit provided more than 300 individuals with information on topics such as: saving for the future, mindfulness for caregivers, the role of siblings, regression in adults with Down syndrome and Alzheimer’s Disease.
• Bills ending discrimination against people with disabilities in organ transplantation have passed in Washington, Louisiana, Indiana, Virginia and Iowa.
• Another 37 Members of Congress have been added as co-sponsors on bills that address NDSS legislative priorities, including 10 new cosponsors for the Marriage Access for People with Special Abilities Act (MAPSA).
In the year ahead we will be launching new initiatives focused on aging with Down syndrome and supporting caregivers. We will once again hold a virtual Adult Summit and various community engagement events. Our legislative work also continues. While we make progress each year, we have not yet successfully passed all of our priority laws. Additionally, we will be doing even more to expand our education programming and our efforts to advance employment for individuals with Down syndrome.

Financials

National Down Syndrome Society
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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National Down Syndrome Society

Board of directors
as of 11/06/2020
SOURCE: Self-reported by organization
Board co-chair

F. Gordon Spoor CPA, PFS, CGMA


Board co-chair

Charles Symington

F. Gordon Spoor, CPA, PFS, CGMA

Elizabeth Goodwin

Charles Gerhardt, III, JD

Tiffany Barfield

Laurie Walters

Amy Allyn

Janet Slaughter Eissenstat

Rick Kosmalski

Roger Reeves

Charles Symington

Chris Brooks

Steve Freeman

Sean Fromm

Carlo Frappolli

Annette Halprin

Mark Johnson

Brandon Gruber

Self-Advocate

Heather Lavalle

John Cronin

Debbie Morris

Megan Perez

Robert Siegel

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 10/30/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 11/06/2020

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.