Down Syndrome Association of Pittsburgh

aka DSAP   |   Pittsburgh, PA   |  www.dsapgh.org

Mission

The Mission of the Down Syndrome Association of Pittsburgh is to enrich the lives of individuals with Down syndrome, their families and communities in which they live. We accomplish this through communication, education, advocacy, fellowship and support for our community members’ well-being through our longstanding alliance with the Pediatric and Adult Down Syndrome Centers of Western PA.

Notes from the nonprofit

The Down Syndrome Association of Pittsburgh has a vision that we promote a community in which all of its citizens appreciate and benefit from the diversity of the people who live there, including those with Down syndrome. A place where we are all accepted and valued for our unique abilities and contributions and are guaranteed the opportunity and choice to create our own pathways to our definition of a successful life.

Ruling year info

1993

Executive Director

Ms Meredith Peterson

Main address

2211 Lesnett Rd, Unit 12864

Pittsburgh, PA 15241 USA

Show more contact info

EIN

25-1621542

NTEE code info

Human Services - Multipurpose and Other N.E.C. (P99)

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

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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?

Pittsburgh Buddy Walk

The Pittsburgh Buddy Walk is our community's annual "Family Reunion" and we are excited to celebrate in-person at Schenley Plaza (4100 Forbes Ave, Pittsburgh, PA 15260) on Sunday, October 24, 2021! As our largest fundraiser of the year, the Pittsburgh Buddy Walk provides about 75% of the needed resources for the Down Syndrome Association of Pittsburgh to fulfill its mission. Each and every day we strive to enrich the lives of individuals with Down syndrome and to support their families with our ongoing programming and free resources. As the founding group who started the Down Syndrome Center of Western PA to provide specialized medical care for individuals of all ages with Down syndrome, we continue to financially support the Center with funds raised from this event

Population(s) Served
Adults
Children and youth
Family relationships
Ethnic and racial groups
People with disabilities

Celebrate World Down Syndrome Day by hosting a dance for our families and community.

Population(s) Served

We are thrilled to continue our virtual FAMILY CONNECTION PROGRAM. This program is intended to bring parents and loved ones together to provide support and insight to one another in a safe and comforting environment. These groups are targeted to a specific age or part of the Down Syndrome journey to ensure the content is relevant and relatable for all attendees. We have seven different groups.

Population(s) Served
Adults
Children and youth
Ethnic and racial groups
People with disabilities
Social and economic status

Education is a vital need for our parents/caregivers and community members. This virtual program is intended to educate, inform and in some cases, entertain our community. All events are FREE and open to ALL. Some examples have been on "Positive Behavioral Interventions," "Medical Advocacy," "Yes, my child can go to College," "Toolkits to use in classrooms to promote inclusion," "National Authors," and "Nationally known self-advocate (adult with Down syndrome).

Population(s) Served

We are so excited to announce that the Down Syndrome Association of Pittsburgh will be sponsoring the 9th Annual TRI21-4DS Walk, Run, or Bike Event on Sunday June 13 at Riverfront Park in Millvale (70 Riverfront Drive, Pittsburgh, PA 15209). You can choose one of the three activities to participate in: a 2-mile fun walk, a 5-mile run, or a 10-mile bike ride. New this year is registrants may also create a team page to raise funds for the Down Syndrome Center of Western PA (DSC). Did you know that the DSC is a specialized medical clinic that sees patients from infancy through adulthood with Down syndrome and one of the ONLY one of it's kind in the entire USA? Our doctors are leaders in the field and with your support, the DSC can continue to serve the complex needs of individuals with Down syndrome throughout our region.

Population(s) Served
Adults
Children and youth
Ethnic and racial groups
Family relationships
Social and economic status
Adults
Children and youth
Ethnic and racial groups
Family relationships
Social and economic status
Adults
Children and youth
Ethnic and racial groups
Family relationships
Social and economic status
Adults
Children and youth
Ethnic and racial groups
Family relationships
Social and economic status

In 2020, we held our 3rd Annual Holiday Party "On Wheels" and provided free vehicle tickets to 200 families to participate in the Holiday Zoo Lights program at the Pittsburgh Zoo.

Population(s) Served
Adults
Ethnic and racial groups
Family relationships
Social and economic status
People with disabilities
Adults
Ethnic and racial groups
Family relationships
Social and economic status
People with disabilities

Launching in 2022, DSAP will have a Pittsburgh branch of the National First Call Program. This caters to the “First Call” needs of new/expectant parents and medical professionals when they first learn of a suspected or confirmed Down syndrome diagnosis. Trained parent mentors provide peer support and resources to these parents.

Population(s) Served
Parents
Adults
Pregnant people

Where we work

Affiliations & memberships

Down Syndrome Affiliates in Action 2020

National Down Syndrome Congress 2021

National Down Syndrome Society 2020

Goals & Strategy

SOURCE: Self-reported by organization

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    The Mission of the Down Syndrome Association of Pittsburgh is to enrich the lives of individuals with Down syndrome, their families and communities in which they live.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Community meetings/Town halls,

  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    From our community survey conducted in the fall of 2020, we took that data and held several virtual Town Hall Meetings for our community. We were able to provide a summary of survey results, share some proposed programs, and then allow feedback in real time in the Town Hall meetings. After these meetings, we launched our Family Connections Program and Virtual Speaker Series as our community asked for connection/support from peers as well as educational opportunities. In February, 2022 we launched another community survey to gain their feedback from the programs and events that we provided in 2021. The goal is learning the areas of growth needed or barriers and what needs to be adjusted to reach more of our community. We added race and ethnicity to this survey.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    By asking for feedback, we feel this has engaged our community and showcased how much we value them. We are hear to serve our community and provide and support individuals with Down syndrome and their families. Learning more about how we need to adjust/pivot to reach more and how to remove the barriers holding some back.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to get honest feedback from the people we serve,

Financials

Down Syndrome Association of Pittsburgh
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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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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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Down Syndrome Association of Pittsburgh

Board of directors
as of 2/4/2022
SOURCE: Self-reported by organization
Board co-chair

Matthew McGrath

Travelers Insurance

Term: 2022 - 2024


Board co-chair

Shannon Striner

TruFusion Pittsburgh

Term: 2022 - 2024

Matt McGrath

Travelers Insurance

Tracy Sheasley

American Eagle Outfitters

Angela Caldwell

University of Pittsburgh

Mindi Hilborn

Catham University

Kelly Seng

Munchkins University

Shannon Striner

TruFusion

Megan Loftis

Loftis Law Firm

Elizabeth Gilbert

Therapy Works, LLC

Nicole Scott

Usborne Books

David Hassey

Aerotek

Whitney Menarcheck

University of Pittsburgh

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? No

Organizational demographics

SOURCE: Self-reported; last updated 08/25/2021

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

Gender identity

 

Sexual orientation

No data

Disability

Equity strategies

Last updated: 02/04/2022

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
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.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.