GOLD2023

The Down Syndrome Association of Northeast Ohio

Supporting & Celebrating Down Syndrome in Northeast Ohio

aka The Up Side of Downs of Northeast Ohio   |   INDEPENDENCE, OH   |  www.dsaneo.org

Mission

To provide support, education, and advocacy for people with Down syndrome, their families and communities throughout Northeast Ohio.

Ruling year info

1990

Executive Director

Toni Mullee

Main address

PO Box 31720

INDEPENDENCE, OH 44131 USA

Show more contact info

Formerly known as

Up Side of Downs of Greater Cleveland

EIN

34-1630114

NTEE code info

Services to Promote the Independence of Specific Populations (P80)

Alliance/Advocacy Organizations (E01)

Fund Raising and/or Fund Distribution (T12)

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 Up Side of Downs provides support, education and advocacy for people with Down syndrome, their families, and communities in 16 counties in Northeast Ohio. USOD is the primary source in Northeast Ohio for accurate and up-to-date information to families, the medical community, schools and the larger community about Down syndrome. USOD also addresses the need for programs for parents and people with Ds, including support groups, parent education, math & reading enrichment for students, and social programs.

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?

New & Expectant Parent Support

As soon as DSANEO is provided with contact information for a new or expecting parent of a baby with Down syndrome, we provide support to the family in a variety of ways. Our Family Outreach Coordinator provides materials, a beautiful basket of goodies welcoming baby, and support through one of our baby & toddler groups and as a one-on-one resource for the parents. We will visit parents in the hospital or at home, when they are ready, and depending on their preferences. New & Expectant parents are also connected with a New Parent Mentor right in their community to help them build a network of support.

Population(s) Served
Parents
Infants and toddlers

Social Events: The DSANEO hosts events each month for individuals with Down syndrome and their families to come together and share common
interests. For individuals with Down syndrome, it is an opportunity to gather with friends in the community. Social group activities rotate around NEO. Among these are: Sunburst Social Squad for adults with Down syndrome, LOL Teen Group, CLE Down Syndrome Day celebration, Pumpkin Fest, Annual Holiday Party, visits to local theaters, sporting events, movie outings, Bowling & Baby & Toddler Playgroups. Families look forward to these events as an opportunity to network and share information and resources with one another. Suggestions for additional events or different locations are always welcome. Check our community calendar and register for the latest events to ensure your spot!

Population(s) Served
Families
Adults

Family Grant Program –Twice a year the DSANEO awards medical or educational financial support
through family grants.  Approximately $30,000 each year is distributed to local families.

Population(s) Served
Families

DSANEO offers education programs in support of children from toddlers through adulthood. Programs include: Wiggle, Giggle, & Learn (toddlers), Early Learners (preschool), Kinder Kickstart, Lively Learners (K-5), Cooking with Confidence (teens & adults), Living & Learning (teens & adults). Programs are taught by licensed educators and curriculum is based on research about how children with Down syndrome learn.

Population(s) Served
Infants and toddlers
Children and youth
Young adults

The Medical Outreach program provides important medical information to doctors' offices, hospitals, genetic counselors, medical students and parents. The DSANEO Medical Advisory Board was created in 2019 to provide medical expertise to the organization. DSANEO Medical Outreach Director provides up-to-date information on the DSANEO website with relevant medical information, reviews and promotes Down syndrome research studies, and conducts medical webinars for families. the Medical Outreach Director presents to grand rounds, panels, and students in health care fields.

Population(s) Served
Parents
Caregivers

Where we work

Affiliations & memberships

National Down Syndrome Society 1995

National Down Syndrome Society 2023

Global Down Syndrome Foundation 2023

Down Syndrome Affiliates in Action 2023

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 Up Side of Downs is working to provide support through programming and resources to parents, people with Down syndrome, community members, and professionals who serve them to support individuals with Down syndrome in order that they achieve their goals in school, employment, and community. USOD's work is done so that people with Down syndrome are accepted, included and empowered. The Up Side of Downs works toward creating a community where people with Down syndrome have limitless opportunities and the ability to pursue their dreams.

USOD’s strategy for addressing the issues individuals with Ds face, is to educate and support individuals with Ds, their families and the wider community through targeted programs and communication, utilizing the most accurate and up-to-date resources available. Programs are offered and information is shared throughout our service area. We also advocate on behalf of the Down syndrome community at the local, state and national levels through strategic partnerships with other Down syndrome organizations with similar goals.

USOD has 11 staff members (1 full-time and 10 part-time) providing valuable programming and support to individuals with Down syndrome, their families and the broader community throughout 16 counties in Northeast Ohio. We have a Medical Advisory Board comprised of medical professionals throughout NEO who provide information relating to medical issues. Our board is comprised of professionals in a variety of fields and they support our mission and programs as well.

The Up Side of Downs has created robust programming in several areas. The organization provides supplemental education programs for children from toddlers to teens. USOD has steadily added programs over the past several years in order to accomplish this. Additionally, education programs for adults with Down syndrome have also increased as the organization has determined a great need in this area. Medical outreach has been expanded and includes a medical advisory that meets annually and provides ongoing support to the organization throughout the year. Support groups have been added and, when necessary, retooled to meet parent needs. Social programs with a focus on skill building, such as golf, bowling, and bike camp, are being expanded throughout our service area.

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?

    Individuals with Down syndrome & their families; people in the medical & education communities; the larger community within our geographic area

  • 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 aim to collect feedback from as many people we serve as possible, We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

The Down Syndrome Association of Northeast Ohio
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Operations

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

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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.

The Down Syndrome Association of Northeast Ohio

Board of directors
as of 02/01/2023
SOURCE: Self-reported by organization
Board chair

Mark Szczepanik

Giganto

Term: 2022 - 2025

Michael Winschel

Aon

Erin O'Toole

8th District Court of Appeals

Katherine Koenig

Cleveland Clinic

Eva Love

Cleveland Clinic

David Gifford

BMC Software

Mark Szczepanik

Giganto

Bruce Batista

Sherwin Williams

Rob Niehaus

Hyland

Sarah Csongei

Lakewood Public Schools

Michele Dynia

Cleveland Airport System

David Barth

Lakeside Financial Partners

Betsy Lambert

Huntington Bank

Ellen Spear

Lakeshort Speech Therapy LLC

Adelaida Brown

Family Solutions of Ohio

Jake D'Orazio

Jacobs Ladder Special Needs Fitness

Jill Urich

Emerald Hospitality

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 2/1/2023
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: 02/01/2023

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • 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 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.