PLATINUM2023

Virginia Down Syndrome Association

Educate, Empower, Engage

aka VDSA   |   Richmond, VA   |  Virginiadsa.org

Mission

To benefit the lives of individuals with Down syndrome and their families through individual and family support, education, community awareness and advocacy.

Ruling year info

1990

Executive Director

Jennifer Case

Main address

1504 Santa Rosa Road Suite 124

Richmond, VA 23229 USA

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Formerly known as

Downs Syndrome Association of Greater Richmond

EIN

54-1252305

NTEE code info

Human Service Organizations (P20)

Disabled Persons' Rights (R23)

Birth Defects (G20)

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?

First Call

Visit website for full program descriptions. First Call program provides vital support and information to parents of babies who have recently received a Down syndrome diagnosis. The First Call Program assists between 25-30 families by providing information and gift bags especially designed to meet their unique needs. We hold a New Moms’ Luncheon, giving the new moms and their babies, young adults with Down syndrome, staff and committee chairs the opportunity to meet and share information about the Down syndrome community. We continue to work with area hospitals and physicians to ensure that all families whose children receive a Down syndrome diagnosis are aware of our organization and the benefits and many opportunities that are offered. A group of parents who live locally in these areas are now prepared to support families whose babies receive a Down syndrome diagnosis within their community

Population(s) Served
Families

The Learning Program provides early literacy one Saturday a month to children ages 3 - 9. This helps level the educational gap in school to increase their opportunities to learn alongside their typical peers. Parents also participate by attending a separate class to learn how to implement the program at home and how to transfer these techniques into their child's daily school learning. The transition boot camp educates parents on what a good transition program can be and equips them with the tools to work with their child's school to create the best possible transition program for their child. There is a huge gap in what should happen and what actually does happen within the school setting. These programs cost upwards of $30K to run per year

Population(s) Served
Children and youth

VDSA's social programs provide opportunities for social experiences with peers within the community. These programs foster friendships, independence and community experiences to help improve self-esteem and community involvement. All people with Down syndrome are valued members of their communities and we want the community to value them. Many of our new families come to VDSA through our social groups and they become valued members and continue to receive services throughout their life. These programs cost between $20K and $25K to run each year.

Population(s) Served
Families
Young adults
Children and youth
Caregivers

Moving On! is a NEW adult program that will develop key skills needed to live independently. This program is specifically designed to help adults with DS learn to live independently in their current living environment. Each series will focus on a specific topic area such as:
• Understanding Financial Literacy which taught 19 adults money management, safely using an ATM, saving money, and why money is important.
• Kitchen safety and small appliance use will be an 8 week course that will take place weekly in September and October
• Public Speaking and Workplace Conversation is the 3rd class in the series and will take place in January/February 2019. Students will learn proper workplace conversation, how to start or join a conversation, and how to be an advocate for their own needs in the workplace and community

This program will also help identify areas that are challenging so proper supports can be obtained.

Population(s) Served
Adults

This series is held quarterly (virtually) on topics such as early literacy, nutrition, oral motor, development, toilet training or other topics requested by the families who have children with DS 0-5 years old. This is also time to help families develop a much needed support network with other parents.

Population(s) Served
Parents
Infants and toddlers

The Annual Disability Education and Transition Conference brings together over 400 educators, parents and self-advocates from all over Virginia together to strengthen education for all children with disabilities. In 2018, the conference was expanded to add a Transition Tract to help educators and parents understand the transition process. Attendees enjoy 11 breakout sessions, IEP consults, educator awards, 27 exhibitors and the opportunity to network with other parents and education professionals. 99% of respondents said they would return to the conference next year!

Population(s) Served
Academics
Parents

Our Summer Employment Academy gives eight high school students with Down syndrome the opportunity to practice employment soft skills as well as have a career exploration experience through a variety of job sites. This 4-week summer program is a partnership between our organization and numerous businesses around the community. Participating businesses learned more about the benefits of employing a person with Down syndrome and how they are supported in the work place. Students gained valuable soft employment skills, on-site career exposure, increased their opportunity for future employment, and helped identify longer term employment goals.

Population(s) Served
Adults

Education seminars are offered throughout the year and are open to the public free of charge. These seminars cover a wide variety of topics such as oral and motor development, IEP and Transition services, behavior, potty-training, Special Needs Trusts, and Able Accounts.

Population(s) Served
Families

Where we work

Awards

Outstanding Event Communications for DSAGR's 2009 Buddy Walk 2010

National Down Syndrome Society

Outstanding Affiliate of the year 2017

National Down Syndrome Congress

Affiliations & memberships

HandsOn Greater Richmond 2012

Partnership for Nonprofit Excellence 2010

National Down Syndrome Congress

National Down Syndrome Society

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 families served

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

Output - describing our activities and reach

Direction of Success

Increasing

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.

To benefit the lives of individuals with Down syndrome.

Individual and family support
Education
Community awareness
Advocacy

We have a strong organizational culture that values supporting families.
We are innovative in our approach to supporting families.
We have a leadership team with a track record of success.
We collaborate with multiple organizations to provide innovative and wholistic services.

• Provided family navigation support services to 113 families of individuals with Down syndrome.
• Provided 242 educators, families, and community leaders with education about best practices and recommendations for individuals with Ds.
• Across social and education programs we served 202 individuals with Down syndrome in 2022
• We provided programmatic or individual support to 416 families in 2022 through either program attendance or an individual family support connection.

Financials

Virginia Down Syndrome Association
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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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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.

Virginia Down Syndrome Association

Board of directors
as of 03/24/2023
SOURCE: Self-reported by organization
Board chair

Mark Boone

AEGIS Insurance Services, Inc.

Term: 2023 - 2022

Mark Boone

Dominion Energy

Shelley Lantz

Self-Advocate

Kim Boose

Chesterfield Count Early Intervention

Amy Bravo

Parent of a child with Down syndrome

Carol Coffin

Tripp Gibson

Parent of a child with Down syndrome

Billy Hamm

Genworth

Emmanuel Gayot

Edify Barber Academy

Carole Ivey

VCU

Christian Emery

Carmax

Valentina Intagliata

UVA

Clifford Twiggs

TopGolf

Katie Haskins

Counselor in Residence

Amanda Wheeler

Child Development Resources

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 1/26/2023

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

Equity strategies

Last updated: 01/26/2023

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 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.
  • 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.