Down Syndrome Association of Connecticut

What Down Syndrome Association of Connecticut does

The Down Syndrome Association of Connecticut (DS ACT) is a 501(c)(3) nonprofit organization, founded in 1986 and headquartered in Pawcatuck, CT, that serves approximately 3,000 Connecticut families affected by Down syndrome. The organization delivers a portfolio of programs spanning peer support, educational advocacy, literacy tutoring, and direct financial assistance, including the First Call support hotline (888-486-8537), IEP Mentoring, the DS ACT Literacy and Education Center, Advocacy Avengers, and a family of grants (Mini-Grants up to $500, Summer Camp Grants, and Sunshine Grants). Signature events include the Step Up for Down Syndrome Walks (New Britain Stadium and Norwich Mohegan Park Pavilion), the annual World Down Syndrome Day Gala, and the members-only Summer Picnic at Camp Harkness. Operations are supported by a nine-person staff led by Executive Director Shanon McCormick.

DS ACT's business model is membership-supported and donation-driven. Annual membership is priced at $35 and unlocks access to the IEP Mentoring program, priority enrollment in literacy services, eligibility for grants, and reduced or free admission to events; complimentary one-year memberships are offered to expectant parents, new parents, and returning members. The technology footprint is modest: a WordPress-based website with calendar subscription feeds (iCalendar, Google Calendar, Outlook) and event livestreaming integrations (Zoom, YouTube Live, Facebook Live) supporting hybrid programming. Distribution is community-led, relying on healthcare provider referrals into the First Call Program, regional support groups across Connecticut, word-of-mouth within the disability community, and a network of formal resource partnerships with national bodies including the Global Down Syndrome Foundation, National Down Syndrome Congress, National Down Syndrome Society, NIH DS-Connect, Linda Crnic Institute, and The Arc. The organization is governed by a board of directors, holds no parent company, and is celebrating its 40th anniversary in 2026.

Name

Down Syndrome Association of Connecticut

Legal name

Down Syndrome Association of Connecticut

Website

https://mydsact.org

Company type

Private

Founded year

1986

Operating status

Operating

Headcount range

1–10 employees

Short description

DS ACT is a 501(c)(3) nonprofit, founded in 1986, serving approximately 3,000 Connecticut families affected by Down syndrome through peer support, IEP advocacy, literacy tutoring, grants, and community events, supported by a $35 annual membership and donations.

Ownership category

akta.pro rank

Product category

Disability Advocacy and Family Support Services

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190), Child and Youth Services (62411)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

Family & Parenting Support Services (BPAGAEAC)

akta.pro secondary industries

Assistive Technology (AT) & AAC Services (EDAJAKAF), Family Resource Centers & Wraparound Support Services (EDACALAH)

Keywords

• Disability advocacy services
• Family support programs
• Special needs education
• Community health support
• Nonprofit disability services

Headquarters

HQ city

Pawcatuck

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others, Infrastructure

Revenue model

1. Membership Fees: Annual membership dues at $35 per year, with complimentary one-year membership offered to expectant parents and new parents of children with Down syndrome, as well as those returning after many years.
2. Donations and Fundraising: The organization accepts donations and holds third-party fundraising events to support programs and services.
3. Third-Party Fundraising Events: Third-party events require advance permission and must comply with 501(c)(3) fiduciary guidelines.
4. Event Admission: Reduced or free admission to educational and social events for members; special members-only events like summer picnic.
5. Gala and Sponsorships: Annual World Down Syndrome Day Gala with sponsorship opportunities, such as the 40th Anniversary Gala in March 2026.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

DS ACT is a 501(c)(3) nonprofit organization that delivers advocacy and direct family support services to nearly 3,000 Connecticut families affected by Down syndrome. Core deliverables include the First Call peer support hotline, IEP Mentoring, the DS ACT Literacy and Education Center, Regional Support Groups, advocacy training (Advocacy Avengers), and direct financial assistance through Mini-Grants, Summer Camp Grants, and Sunshine Grants. Programs are gated by a $35/year membership, with signature annual events (Step Up Walk, Gala, Summer Picnic) used for both community engagement and fundraising.

Product overview

The Down Syndrome Association of Connecticut (DS ACT) is a nonprofit organization providing advocacy and family support services, not a software product company. Its offering consists of a portfolio of community programs, educational resources, and awareness events centered on supporting individuals with Down syndrome and their families. The core programs include the First Call support hotline, Advocacy Avengers advocacy training, the DS ACT Literacy and Education Center with IEP Mentoring, and Regional Support Groups. Financial support programs include Mini-Grants (up to $500 for organizations), Summer Camp Grants, and Sunshine Grants for members. Signature events include the Step Up for Down Syndrome Walks (held at New Britain Stadium and Mohegan Park in Norwich), the World Down Syndrome Day Gala, and the Annual Summer Picnic at Camp Harkness. DS ACT Membership ($35/year) provides access to all programs and events, with free membership available for expectant parents and families with children under one year. Additional resources cover medical information, prenatal testing guidance, guardianship and estate planning, and financial planning for families.

Differentiator

Problem solved

Functional benefit

Products and services

• DS ACT Membership Annual $35 membership that provides e-newsletter subscription, reduced or free admission to educational and social events, access to members-only events like the summer picnic, IEP Mentoring program access, first priority for Literacy and Education Center programs, and eligibility for Summer Camp Grant and Mini-Grant programs. Complimentary one-year membership is offered to expectant parents and new parents of children with Down syndrome, as well as returning members after long absences, with fee waivers available for financial hardship.
• First Call Program

Quantifiable outcome

• Nearly 3,000 families served across Connecticut
• +2 more outcomes

Named customers2 records

Segments3 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration7 records

Partnerships

15 partnerships are on record, tiered core and minor.

• Global Down Syndrome FoundationcoreOthersNational organization providing COVID-19/Down Syndrome resources and prenatal testing information. DS ACT supports Global's COVID-19 resources and shares their educational materials with Connecticut families.
• National Down Syndrome CongresscoreOthersNational organization providing family toolkit, prenatal testing resources, and advocacy support. DS ACT provides their materials to Connecticut families.
• National Down Syndrome SocietycoreOthersNational organization offering 'A Promising Future Together' resources for families.
• Down Syndrome Medical Interest GroupminorOthersProvides healthcare guidelines and checklists for individuals with Down syndrome that DS ACT shares with families and medical providers.
• Linda Crnic Institute for Down SyndromeminorOthersFirst organization in the US with mission to eradicate medical and cognitive ill effects of Down syndrome through research and clinical care. Associated with Anna and John J. Sie Center for Down Syndrome at Children's Hospital Colorado.
• Dr. Brian SkotkominorOthersAuthor of best practices for health care professionals delivering prenatal/postnatal diagnosis, recommended by DS ACT.
• Connecticut Birth-to-ThreecoreOthersConnecticut state early intervention program that DS ACT connects families with for developmental support.
• Down Syndrome Association of Greater CincinnatiminorOthersSupports the National Down Syndrome Adoption Network, which DS ACT refers families to when adoption is being considered.
• Boston Children's HospitalminorOthersHosts the Allen C. Crocker Speaker Series with free webcast talks, including content for new parents like 'Your Baby's First Year'.
• NIH (National Institutes of Health)coreOthersHosts DS-Connect, the Down Syndrome Registry. DS ACT encourages families to join to help advance research.
• Able National Resource CenterminorOthersProvides information on ABLE accounts and estate planning for families of individuals with disabilities.
• Down Syndrome Autism ConnectionminorOthersNon-profit dedicated to co-occurring Down syndrome and autism spectrum disorder. Provides welcome kits and Facebook support groups.
• The ArcminorOthersProvides resources on future planning for individuals with disabilities including estate planning and transition planning tools.
• Jenny Hatch Justice ProjectminorOthersProvides resources on supported decision-making alternatives to guardianship.
• National Center for Supported Decision MakingminorOthersProvides model agreements for supported decision-making arrangements.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Down Syndrome Society (NDSS): National 501(c)(3) that provides advocacy, resources, and programs for people with Down syndrome and their families. Operates broadly across the U.S., overlapping with DS ACT's mission on awareness, advocacy, and family support, but at a national scale.
• The Arc: Large national nonprofit serving people with intellectual and developmental disabilities (IDD), including Down syndrome. Provides guardianship and future-planning resources DS ACT curates; competes for advocacy and family-services mindshare.
• National Down Syndrome Congress (NDSC): National organization providing educational resources, advocacy, and an annual convention for the Down syndrome community. Listed as a core resource partner of DS ACT, demonstrating significant mission overlap and direct content/program parallel.
• Easterseals: National disability services organization providing early intervention, education, and family support. Has Connecticut presence and adjacent programming; competes for grants and donor attention in the same space.
• Global Down Syndrome Foundation: National foundation funding research, medical care, and advocacy for individuals with Down syndrome. Provides many of the same prenatal testing and healthcare resources DS ACT distributes to Connecticut families.

Direct peers

• Down Syndrome Association of Greater Cincinnati: Regional Down syndrome association operating a comparable family-support, advocacy, and event-driven model in another metro. Explicitly named in DS ACT's own partnerships list, making it a directly comparable regional peer.
• Massachusetts Down Syndrome Congress: State-level Down syndrome association serving Massachusetts families with advocacy, education, parent support, and community programs. Closest geographic and structural analog to DS ACT.
• Down Syndrome Guild of Greater Kansas City: Regional Down syndrome nonprofit providing family support, education advocacy, and community programming in a defined U.S. metro. Operates an essentially identical service model to DS ACT.

Emerging players

• Down Syndrome Diagnosis Network (DSDN): National nonprofit focused on delivering peer support at the point of Down syndrome diagnosis, including the "Roadmap of Hope" for new parents. Directly competes with DS ACT's First Call Program in the digital/diagnosis-moment niche.

Others

• Linda Crnic Institute for Down Syndrome: Research and clinical care institute (affiliated with Children's Hospital Colorado) focused on eradicating medical and cognitive effects of Down syndrome. Listed as a DS ACT partner and represents the research/medical side of the same mission.

Market position

Strengths4 records

Weaknesses3 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/connecticut-down-syndrome-congress

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Down Syndrome Association of Connecticut