THE UP SIDE OF DOWNS OF NORTHEAST OHIO

Supporting & Celebrating Down Syndrome in Northeast Ohio

aka USOD   |   INDEPENDENCE, OH   |  www.usod.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 the USOD 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 USOD hosts several
events each month for all members to come together and share common
interests and values. Among these are: Pumpkin Fest,, Annual Holiday
Party, Volunteer Appreciation Day, Bowling & Mom & Tot
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!

Mind-Body-Soul Group: Independent social
opportunities for young adults (18+) with Down syndrome.
Parents are encouraged not to attend so that the young adults may develop independent skills. Activities include miniature golf, movies, bowling,
dances, pottery-painting parties, horseback riding, skating and more.

Population(s) Served
Families
Adults

Family Grant Program(http://www.theupsideofdowns.org/support/family-grant-program) –
Twice a year the USOD awards medical or educational financial support
through family grants.  Approximately $30,000 each year is distributed
to local families.

Population(s) Served
Families

USOD offers education programs in support of children from toddlers through high school. Programs include: Little Achievers (toddlers), The Learning Program (preschool to grade 5), TEEN (teenagers). All 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

The Medical Outreach program provides important medical information to doctors' offices, hospitals, genetic counselors, medical students and more. Medical Outreach helps Ohio medical professionals comply with Ohio House Bill 552 requiring that physicians provide a fact sheet on Down syndrome from the Ohio Department of Health to patients with a test result indicating Down syndrome or a prenatal or postnatal diagnosis of Down syndrome by providing the fact sheet and other materials supplied by the Up Side of Downs.

Population(s) Served
Parents

Where we work

Affiliations & memberships

National Down Syndrome Society 1995

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.

Financials

THE UP SIDE OF DOWNS OF NORTHEAST OHIO
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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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THE UP SIDE OF DOWNS OF NORTHEAST OHIO

Board of directors
as of 6/2/2021
SOURCE: Self-reported by organization
Board chair

Deirdre Roselli

Deirdre Roselli

Federal Reserve Bank of Cleveland

Michael Winschel

Risk International

Michael Quinlan

Mansour,Gavin, Gerlack & Manos Co., LPA

Erin O'Toole

8th District Court of Appeals

Katherine Koenig

Cleveland Clinic

Eva Love

Cleveland Clinic

David Gifford

BMC Software

Mark Szczepanik

Adcom

Bruce Batista

Sherwin Williams

Rob Niehaus

Hyland

Sarah Csongei

Lakewood Public Schools

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • 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 06/02/2021

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

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data