PLATINUM2024

Down Syndrome Association of Central New Jersey Inc

Breaking down barriers for people with Down syndrome

aka DSACNJ   |   Ewing, NJ   |  www.dsacnj.org

Mission

DSCANJ provides support, education, opportunity, and enrichment to persons with Down syndrome (DS) and their families. We are a point of contact for information and support for families who have received the diagnosis either during pregnancy or after birth of their child and through the lifespan. We educate our community about DS with the hopes of breaking down barriers, eliminating misconceptions, and promoting inclusion for those with DS. We work to improve communication with the medical community. We advocate for parents to receive their child’s diagnosis in a sensitive manner, without bias, and accompanied by accurate information on what it means to have DS and the amazing capabilities of people with DS. We help children and adults reach their full potential with our programming.

Notes from the nonprofit

Our small non-profit 501(c)3 organization is more than 3 years old, and our annual gross receipts are less than $50,000. Therefore, we are eligible to file IRS Form 990-N to satisfy our annual financial reporting requirement. We are not required to file any other financial statement. Our organization and finances have changed since 2017 and 2018. Board members have changed and revenue has decreased significantly. We are no longer eligible to complete the IRS Form 990 which requires financial information such as the breakdown of Revenue vs. Expenses, Funding Sources, and Assets & Liabilities. Our finances for current year to previous years, in particular current year vs. 2017 and 2018, are non-comparative.

Ruling year info

1997

President

Melissa Burgos MD

Main address

25 Scotch Road, Suite H

Ewing, NJ 08628 USA

Show more contact info

EIN

22-2593876

NTEE code info

Down Syndrome (G25)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

Sign in or create an account to view Form(s) 990 for 2018 and 2017.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

With the opening of our Club DREAMS* achievement center, we will be able to provide one-on-one tutoring for math, reading, life skills and job skills coaching, Speech, Physical and Occupational Therapies, and extracurricular activities like music, yoga and other fitness and social events. This is especially meaningful for families who cannot afford the extra services that help individuals with Down syndrome in school and life. *Down syndrome Recreation Education Achievement Meeting Space

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?

Club DREAMS

Enrichment programs and after school activities are limited for people with Down syndrome. The National Down Syndrome Society confirms many people with Down syndrome also have other diagnoses (some are on the autism spectrum, ADHD, depression, etc.).

Although these programs are widely accessible to the general population, they often do not have the skill or ability to accommodate the needs of people with Down syndrome in general programming. Because of limited availability, suitable programming is usually offered privately and is very expensive. People with Down syndrome often need extra time and support staff that are familiar with the unique learning style common to people with Down syndrome. Our Club DREAMS center is unique in its goal to offer academics, after school tutoring, and extracurricular activities, socialization, life skills and job skills programs to the Down syndrome community. Our core programming is free.

Population(s) Served
Children and youth
Young adults
People with intellectual disabilities
Caregivers
Economically disadvantaged people

DSACNJ is a parent support group, established to assist families of children and adults with Down syndrome (i.e., Trisomy 21) in the following ways:
• We are an initial point of contact for local families who have received a diagnosis that their newborn or unborn child has Down Syndrome.
• We provide support, encouragement, and up-to-date information to parents of children with Down syndrome and to others whose lives are touched by them.
• We offer meetings and social gatherings for people with Down Syndrome and their families.
• We disseminate information to our members about events, activities, speakers, conferences, and other resources of interest to the Down syndrome community.
• We maintain a network of families to foster an exchange of information regarding local medical resources, conferences, development programs, educational programs, etc. from which our families can benefit.
• We celebrate the lives of our children and encourage them to reach their full potential.

Population(s) Served
Caregivers
Families
People with intellectual disabilities
Economically disadvantaged people

Where we work

Awards

Summer Youth Camp Certificate 2022

NJ Department of Health

Affiliations & memberships

US Youth Soccer 2023

National Down Syndrome Congress 2023

National Down Syndrome Society 2023

Global Down Syndrome Foundation 2023

Rutgers University School of Health Professions ( Physical and Occupational Therapy) 2023

Northern Burlington County Regional High School (NJ) 2023

Capital Harmony Works - Music for the Very Young 2023

Drums Alive 2023

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 rallies/events/conferences/lectures held to further mission

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

People with intellectual disabilities, Low-income people, Working poor, Extremely poor people, Students

Related Program

Club DREAMS

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Noteworthy activities for 2023: Rock Your Socks Off; Designer Bag Bingo; Pennington Day Community Fair; only TOPSoccer program in Mercer County.

Number of overall donors

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

Children and youth, Young adults, Economically disadvantaged people, People with intellectual disabilities

Related Program

Club DREAMS

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Our fundraising efforts were canceled in 2020 due to COVID. We have actively resumed our fundraising activities after the lull. We have a core set of donors who support our mission.

Number of families served

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

People with intellectual disabilities, Infants and toddlers, Caregivers, Families

Related Program

DSACNJ

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Historically, we has been the most active networking and support group for people with Down syndrome and their families in Central NJ and surrounding areas. We have grown to over 400 member families.

Total number of new organization members

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

People with intellectual disabilities, Infants and toddlers, Caregivers, Families

Related Program

DSACNJ

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

NEW FAMILIES SERVED - We offer our First Call Program (a provider referral system to allow us to initiate reaching out to families with new Down syndrome diagnosis in a pre-natal/post-natal setting.)

Number of camps offered

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

People with disabilities, Economically disadvantaged people

Related Program

Club DREAMS

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We collaborated with renowned US Youth Soccer organization to launch the first ever TOPSoccer program in Mercer County (NJ) in summer 2022. We also launched our first Club DREAMS summer camp.

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.

Enrichment programs and after school activities are limited for people with Down syndrome. The National Down Syndrome Society confirms many people with Down syndrome also have other diagnoses (some are on the autism spectrum, ADHD, depression, etc.).

Although these programs are widely accessible to the general population, they often do not have the skill or ability to accommodate the needs of people with Down syndrome in general programming. Because of limited availability, suitable programming is usually offered privately and is very expensive. People with Down syndrome often need extra time and support staff that are familiar with the unique learning style common to people with Down syndrome. Our Club DREAMS* center is unique in its goal to offer academics, after school tutoring, and extracurricular activities to the Down syndrome community.

Having participants meet face-to-face with their tutors, instructors, and therapists will be much more effective for our Down syndrome community. Unlike in a public-school setting, parents will be able to see first-hand and learn hands-on techniques from professionals to assist their children at home. Our one-on-one academic support enhances remote learning received from public schools. We are also offering support for adults to bring forth lifelong learning beyond school and includes life skills and job skills and looking for opportunities for job placement within the community.

*Down syndrome Recreation Education Achievement Meeting Space

Our approach includes:
• Socialization: hosts activities/events for varied age groups, social club for teen and adults
• Supplementary therapeutic services: Physical/Occupational/Speech/Feeding Therapy services
• Academic support: reading/writing, math, computer skills, Homework Helpers program, study buddies
• Enrichment: Gymnastics, dance, sports, karate, music, art, etc.
• Parent Support and Education/Enrichment: regular support sessions for parents, educational topics to include positive parenting skills, coping with pre- and postnatal diagnoses, relaxation/stress management, skills for educating individuals with Down syndrome, play skills for enhancing development of individuals with Down syndrome, topics such as nutrition and exercise, self-care, meditation, yoga.
• Sibling support and socialization: education and social workshops
• Life Skills/Job Training: Workshop for teens young adults such as cooking, cleaning, laundry, hygiene, money management, interviewing
• Medical and community outreach

Our Board consists of a group of passionate and dedicated volunteers as well as one part-time self-advocate who is paid from a grant. Board members include parents and grandparents of people with Down syndrome as well as community advocates and other supporters.

Our Board members work cohesively to achieve our organization goals and expand services. Depending on the individual board member's areas of expertise, talents and interests, they facilitate the development, maintenance or expansion of specific tasks and programming.

Our strengths include:
• Great leadership
• Committed core members
• Diverse board
• Strong core volunteer base
• Long history
• Ongoing virtual and in-person program options

Our goals include:
• Expanding regular programming for all age groups and various skill levels
• 20% increase in our membership's young adults part time employment rate over the first year and increases beyond that
• 90% client overall satisfaction rate with program.

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 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 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?

    We don't have any major challenges to collecting feedback

Financials

Down Syndrome Association of Central New Jersey Inc
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.

Operations

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

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.

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 Central New Jersey Inc

Board of directors
as of 01/25/2024
SOURCE: Self-reported by organization
Board chair

Melissa Burgos

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? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • 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? Not applicable
  • 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 9/4/2022

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
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

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

Equity strategies

Last updated: 11/09/2023

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.