PLATINUM2023

DOWN SYNDROME ASSOCIATION OF WESTERN MICHIGAN

Empowering Individuals. Supporting Communities.

aka Down Syndrome Association of West Michigan   |   Grand Rapids, MI   |  www.dsawm.org

Mission

The Down Syndrome Association of West Michigan is a resource and advocacy organization promoting public awareness and supporting lifelong opportunities for individuals with Down syndrome and their families.

Ruling year info

1986

Executive Director

Katie Hollis

Main address

160 68th St. SW Suite 110

Grand Rapids, MI 49548 USA

Show more contact info

EIN

38-2641856

NTEE code info

Developmentally Disabled Services/Centers (P82)

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

We are a resource and advocacy organization promoting public awareness and supporting lifelong opportunities for individuals with Down syndrome that aims to provide support for all families in the Western Michigan Down syndrome community. The Down Syndrome Association of West Michigan (DSAWM) and its subsidiary, the Down Syndrome Association of West Michigan Foundation have both been working to support the Down syndrome community across West Michigan since their inceptions. Since the staff and membership of both organizations are clearly connected, it is time that the organizations have a clear strategic path to optimize our joint resources and amplify each other's message.

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?

Rapid Runners

This Couch to 5k program helps those with Down syndrome gain endurance as they practice running with volunteers throughout the summer, leading up to a 5k in September.

Population(s) Served
People with disabilities

Teens and adults with Down syndrome aged learn culinary terminology, cooking methods, measurement, and kitchen safety while crafting a delicious, healthy, gluten-free meal.

Population(s) Served
Older adults
Young adults
Adolescents

In the summer, DSAWM hosts a week-long iCan Bike Camp where children with disabilities ages 8 and older can learn to ride a typical two-wheeled bicycle using proven, research-based methods to help them overcome balance issues.

Population(s) Served

Buddy Up is a weekly tennis program that teaches children and teens with Down syndrome the game of tennis while supporting healthy activity and motor function. Athletes aged 5 and older work with professional coaches and one-on-one Buddies.

Population(s) Served
People with disabilities
People with disabilities
People with disabilities

Shape Up is a health and fitness program for people with Down syndrome aged 14 and older. The weekly class consists of 45 minutes of nutrition instruction and 45 minutes of aerobic exercise.

Population(s) Served

All babies can communicate earlier using simplified sign language. This is especially beneficial for the Down syndrome population as they are prone to speech delays. This hybrid program is inclusive and open to the community to teach baby sign to individuals under 5 as well as their family members.

Population(s) Served
Infants and toddlers

Caregivers of individuals with Down syndrome over the age of 30 are invited to this support group sponsored by DSAWM and Alzheimer’s Association. Participants share experiences and discuss the process of caring for loved ones growing older with Down syndrome as well as the latest research that impact them.

Population(s) Served
Seniors
Older adults

21 Shades is a support group for families of color and multicultural/multiracial families who are part of the West Michigan Down syndrome community. Gatherings and opportunities to connect are offered frequently for families to share their experiences and discuss topics relevant to the intersection of Down syndrome and race.

Population(s) Served
People with disabilities
People with disabilities
Caregivers
Families
People with disabilities
Caregivers
Families
People with disabilities
Caregivers
Families
Ethnic and racial groups

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 programs documented

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

Output - describing our activities and reach

Direction of Success

Increasing

Number of participants engaged in programs

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with disabilities, Caregivers, Families

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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.

Unified 2.0 will enhance our effectiveness and efficiency through stronger communication that will catalyze our efforts to serve and support the Down syndrome community of West Michigan. In the first year of this strategic plan we aim to reorganize with 20 specific SMART goals that fall under larger goals of restructuring staff roles, setting up a new CRM, volunteer coordination, setting up committees and finding new opportunities.

Our four overarching strategies to achieve our goals are: 1)diversifying our revenue sources, 2)enhancing our message, 3)expanding our programming, and 4) strengthening our community.

In the first year of Unified 2.0, we have laid a great foundation for the growth and success of our organization. We started with setting up a new CRM to better track our data and restructured the staff and their roles to dramatically improve efficiencies around the office. Additionally, we launched seven new committees comprised of board members, staff and volunteers to create areas of expertise and a structure for getting more things accomplished and increasing our impact in the community, including a a professionally trained First Call committee to welcome new families into the community. With these changes we have also been working to strengthen our communication and share our updates with both our members and donors, while expanding our brand awareness and outreach by developing community partnerships and being more present in the local community. This is helping not only to further our mission of advocacy and awareness, but also lay the ground work for expanding our volunteer network and expanding our programming capabilities.

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 shared information about our current feedback practices.

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

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, 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

  • 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, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

DOWN SYNDROME ASSOCIATION OF WESTERN MICHIGAN
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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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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • 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 WESTERN MICHIGAN

Board of directors
as of 02/08/2023
SOURCE: Self-reported by organization
Board chair

Maria Nykerk

No Affilliation

Term: 2017 - 2023

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 11/30/2022
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

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

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 11/30/2022

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 disaggregate data by demographics, including race, in every policy and program measured.
  • 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • 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.