North Carolina Down Syndrome Alliance

What North Carolina Down Syndrome Alliance does

North Carolina Down Syndrome Alliance (NCDSA) is a private 501(c)(3) nonprofit organization headquartered in Raleigh, North Carolina, that provides free lifetime support, advocacy, and education to individuals with Down syndrome and their families across the state. The organization traces its origins to the Triangle Down Syndrome Network (TDSN), founded in 1998, and rebranded to its current statewide identity on January 1, 2020 to serve all 100 North Carolina counties, currently reaching families in 81 counties through community groups and trained volunteer parent mentors.

NCDSA's core programs include the NC Parent's First Call Program (connecting new and expectant parents with trained mentors), Prenatal Program, Medical Outreach, The Learning Program (a 10-month online curriculum covering reading, math, speech, and life skills), Teens & Adults Program (transition planning, employment, housing, and aging resources), Advocacy, and K-12 educator resources including WDSD Classroom Kits. The organization operates from a small staff of 1-10 employees supported by volunteer mentors, with a Training Center at 2621 Spring Forest Rd., Raleigh, and partners with the UNC Down Syndrome Clinic (funding the Nurse Clinic Coordinator position since the clinic's March 2025 opening) and the Duke Comprehensive Down Syndrome Program for clinical referral pathways. The organization holds DSAIA Accreditation from Down Syndrome Affiliates in Action.

The business model is donation-funded with no fees charged to families. Revenue streams include individual donations (including the T-21 Club recurring program at $21+/month), the annual Triangle Buddy Walk (responsible for over 50% of operating funds; raised $173,000 in 2020), four-tier corporate sponsorships ranging from T-21 Circle ($1,000-$2,499) to Impact Circle ($10,000+), grants (including from the North Carolina Council on Developmental Disabilities), and a planned Legacy Society for bequests and special needs trusts. Annual fundraising events include the Triangle Buddy Walk, the NCDSA Gala with Karaoke Star Search Competition, the NC Statewide Conference, and the World Down Syndrome Day reception at the Governor's Mansion.

Name

North Carolina Down Syndrome Alliance

Legal name

North Carolina Down Syndrome Alliance

Website

https://ncdsalliance.org

Company type

Private

Founded year

2019

Operating status

Operating

Headcount range

1–10 employees

Short description

The North Carolina Down Syndrome Alliance is a Raleigh-based 501(c)(3) nonprofit that provides free, statewide advocacy, education, and support programs to individuals with Down syndrome and their families across all 100 North Carolina counties, funded through donations, the annual Triangle Buddy Walk, corporate sponsorships, and grants.

Ownership category

akta.pro rank

Headquarters

HQ city

Raleigh

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Individual Donations: Majority of funding comes from individual donations received throughout the year and during Buddy Walk season. T-21 Club recurring donation program where donors commit to $21 or more monthly.
2. Buddy Walk Fundraising: Triangle Buddy Walk is the largest fundraising event, responsible for over 50% of funds needed to operate each year. 100% of money raised goes directly to support individuals with Down syndrome in North Carolina. In 2020, raised $173,000 in 3 months during pandemic virtual event.
3. Corporate Sponsorships: Corporate sponsorship program with multiple tiers: Impact Circle ($10,000+), Empowerment Circle ($5,000-$9,999), Advocate Circle ($2,500-$4,999), T-21 Circle ($1,000-$2,499). Sponsorship packets available for events.
4. Planned Giving/Legacy Society: Legacy Society for planned giving through estate plans, bequests, beneficiary designations of retirement funds, and special needs trusts.
5. Grants: Funded through small grants in addition to donations. Received grants from organizations like North Carolina Council on Developmental Disabilities.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels6 records

Core offering

NCDSA provides free, comprehensive lifespan support for individuals with Down syndrome and their families in North Carolina through community-based programs (Parent Mentor Program, NC Parents First Call, Prenatal Program, Medical Outreach, The Learning Program, Teens & Adults services), educational resources for K-12 schools, healthcare system partnerships (UNC and Duke Down Syndrome Clinics), and state-level advocacy. Services are delivered free of charge and funded entirely through donations, corporate sponsorships, grants, and fundraising events such as the annual Triangle Buddy Walk and NCDSA Gala.

Product overview

North Carolina Down Syndrome Alliance offers a comprehensive suite of programs and services supporting individuals with Down syndrome across their lifespan. The organization operates primarily through community-based programs including the NC Parent's First Call Program, Prenatal Program, Medical Outreach, The Learning Program™, and Parent Mentor Program. Annual events such as the Triangle Buddy Walk and NCDSA Gala serve as primary fundraising mechanisms, while advocacy efforts work at state and federal levels. The organization partners with healthcare providers including UNC Down Syndrome Clinic and Duke Down Syndrome Clinic to provide coordinated care. Services extend to K-12 educators through WDSD Classroom Kits and educator resources, and to teens and adults through transition services and social programs. The organization also maintains community groups for area-specific and special interest support.

Differentiator

Problem solved

Functional benefit

Products and services

• NC Parent's First Call Program (Parent Mentor Program) A free, confidential program connecting new and expectant parents of children with Down syndrome with trained volunteer parent mentors, hospital visits, home visits, and ongoing resources across North Carolina.
• Prenatal Program Provides free prenatal information packets and personalized support for families who receive a prenatal diagnosis of Down syndrome.
• Medical Outreach Program providing healthcare resources, current guidelines, and information support for individuals with Down syndrome and their families across North Carolina.
• The Learning Program™ A 10-month structured program offering monthly online sessions focused on reading, math, speech, and everyday skills for families of school-aged children with Down syndrome.
• Teens & Adults Program Support and resources for teenagers and adults with Down syndrome, including transition planning, employment resources, social programs, and aging-related services.
• Advocacy Program State and federal advocacy efforts to protect rights and improve services for individuals with Down syndrome, including policy engagement and community advocacy.
• WDSD Classroom Kits Classroom kits distributed to K-12 educators to support students with Down syndrome and promote inclusive education practices.
• NC Statewide Conference Annual statewide conference covering the lifespan of individuals with Down syndrome, featuring breakout sessions in English and Spanish for families, educators, healthcare providers, and self-advocates.
• Triangle Buddy Walk NCDSA's largest annual fundraising and awareness event held in the Triangle area; responsible for over 50% of operating funds, with 100% of proceeds supporting individuals with Down syndrome in NC.
• NCDSA Gala (Mardi Gras) Annual gala event featuring dinner, dancing, and Karaoke Star Search Competition to raise funds for NCDSA programs, with a target of $60,000 per year.
• World Down Syndrome Day Celebration Annual celebration of World Down Syndrome Day, typically including a reception at the Governor's Mansion in Raleigh.
• CARES Bags Bags containing age-appropriate NCDSA goodies and words of encouragement sent to individuals with Down syndrome during difficult times such as illnesses or surgeries.
• Community Groups Area-specific and special interest community groups providing networking, support, and social connection for families affected by Down syndrome across North Carolina.
• NC Down Syndrome Advocacy Day Annual event bringing the North Carolina Down syndrome community together at the NC General Assembly in Raleigh to advocate for issues affecting individuals with Down syndrome.
• K-12 Educator Resources Resources and guidance for K-12 educators teaching students with Down syndrome, including information on inclusive classrooms and supporting children with Down syndrome.
• UNC Down Syndrome Clinic Partnership Strategic partnership with UNC Health supporting a multidisciplinary Down Syndrome Clinic offering coordinated care in physical therapy, occupational therapy, audiology, speech therapy, nutrition, and family medicine; NCDSA funds the Nurse Clinic Coordinator position.
• Moms' & Dads' Night Out Social events providing opportunities for parents and caregivers of individuals with Down syndrome to connect and build community.

Quantifiable outcome

• Life expectancy increased to 60 years with proper medical care and support
• +1 more outcomes

Named customers1 record

Segments6 records

Ideal customer profiles6 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

19 partnerships are on record, tiered core, major and minor.

• UNC Down Syndrome CliniccoreStrategic or Co-development Partner · 17 March 2025NCDSA proudly supports the UNC Down Syndrome Clinic by funding the Nurse Clinic Coordinator position. The clinic offers coordinated care across multiple disciplines including physical therapy, occupational therapy, audiology, speech therapy, nutrition, and family medicine. NCDSA staff attended ribbon cutting on March 17, 2025.
• Duke Down Syndrome CliniccoreStrategic or Co-development PartnerThe Duke Comprehensive Down Syndrome Program is a multidisciplinary referral clinic for the management of Down syndrome in infants, toddlers, children, and adolescents in Durham/Raleigh and North Carolina.
• Down Syndrome Association of Greater CharlottemajorStrategic or Co-development PartnerNorth Carolina Down Syndrome organization partner serving the Greater Charlotte area.
• Down Syndrome Network of Greater GreensboromajorStrategic or Co-development PartnerNorth Carolina Down Syndrome organization partner serving the Greater Greensboro area.
• Down Syndrome Network of Onslow & Carteret CountiesmajorStrategic or Co-development PartnerNorth Carolina Down Syndrome organization partner serving Onslow and Carteret Counties.
• Down Syndrome Association of Greater Winston-SalemmajorStrategic or Co-development PartnerNorth Carolina Down Syndrome organization partner serving the Greater Winston-Salem area.
• Western NC Down Syndrome AlliancemajorStrategic or Co-development PartnerNorth Carolina Down Syndrome organization partner serving Western North Carolina.
• Coastal Buds of Southeastern NCmajorStrategic or Co-development PartnerNorth Carolina Down Syndrome organization partner serving Southeastern North Carolina.
• National Down Syndrome Society (NDSS)majorStrategic or Co-development PartnerNational organization that supports young researchers, sponsors scientific symposia, advocates for families, and provides information and referral services.
• National Down Syndrome CongressmajorStrategic or Co-development PartnerNational advocacy organization for Down syndrome providing leadership in all areas of concern related to persons with Down syndrome.
• Global Down Syndrome FoundationmajorStrategic or Co-development PartnerPublic non-profit dedicated to improving lives of people with Down syndrome through Research, Medical care, Education and Advocacy.
• Down Syndrome Diagnosis NetworkmajorStrategic or Co-development PartnerConnects, supports and provides accurate information to families with a Down syndrome diagnosis across the country.
• Gigi's Playhouse RaleighminorStrategic or Co-development PartnerDown syndrome achievement center providing educational and therapeutic programs for individuals with Down syndrome.
• Gigi's Playhouse CharlotteminorStrategic or Co-development PartnerDown syndrome achievement center providing educational and therapeutic programs for individuals with Down syndrome.
• The Arc of North CarolinamajorStrategic or Co-development PartnerAdvocacy partner for disability rights. Collaborated with NCDSA on COVID-19 vaccine prioritization advocacy and hospital visitation rights.
• North Carolina Council on Developmental Disabilities (NCCDD)majorStrategic or Co-development PartnerSilver sponsor for 2019 conference. Collaborated on Medicaid budget advocacy efforts. Survey on Medicaid cuts impact to disability community.
• Cardinal Innovations HealthcareminorStrategic or Co-development PartnerSilver sponsor for 2019 conference. LME/MCO organization managing Medicaid waivers.
• Autism Society of North CarolinaminorStrategic or Co-development PartnerCollaborated on COVID-19 vaccine prioritization advocacy efforts.
• First in Families of North CarolinaminorStrategic or Co-development PartnerCollaborated on COVID-19 vaccine prioritization advocacy efforts.

Scale indicators8 records

Recent moves11 records

Expansion highlights6 records

Direct peers

• National Down Syndrome Society: National advocacy organization for individuals with Down syndrome and their families. Highly comparable mission (advocacy, education, support) and serves as the national umbrella under which state affiliates like NCDSA coordinate.
• National Down Syndrome Congress: National membership-based Down syndrome organization providing leadership across advocacy, education, and family support. Directly comparable to NCDSA's lifespan mission at a national scale and a current partner in NCDSA's network.
• Global Down Syndrome Foundation: Public nonprofit focused on research, medical care, education, and advocacy for people with Down syndrome. Comparable in mission breadth and a current partner in NCDSA's referral ecosystem.
• Down Syndrome Diagnosis Network: Connects and supports families receiving a Down syndrome diagnosis with accurate information. Directly comparable to NCDSA's NC Parent's First Call and Prenatal Programs at a national scale and an active NCDSA partner.
• Gigi's Playhouse: Network of Down syndrome achievement centers delivering educational and therapeutic programs. Directly comparable programming model (free, center-based family services) with multiple NC locations including Raleigh, partially overlapping NCDSA's territory.
• LuMind IDSC Foundation: Down syndrome-focused research and advocacy foundation; the destination for NCDSA's former Executive Director Christina Reaves. Comparable mission family with a research-funding focus rather than direct service delivery.
• National Association for Down Syndrome: One of the oldest Down syndrome advocacy organizations in the U.S., supporting individuals and families through education, advocacy, and support services. Comparable lifespan support model to NCDSA.

Broad incumbents

• The Arc: National disability rights and services organization with state chapters including The Arc of North Carolina. Overlaps with NCDSA on disability advocacy (notably COVID vaccine prioritization) but serves a much broader disability population beyond Down syndrome.

Regional players

• Down Syndrome Association of Greater Charlotte: Regional Down syndrome affiliate serving the Greater Charlotte area in NC. Directly comparable service model and a current coordination partner, but covers a different NC geography than NCDSA.

Others

• Down Syndrome Affiliates in Action (DSAIA): Industry body that accredits Down syndrome affiliates including NCDSA. Not a direct peer but the governing network whose accreditation standards shape NCDSA's operating model.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/NCDSAlliance
• Facebookfacebook.com/pg/NorthCarolinaDownSyndromeAlliance
• LinkedInlinkedin.com/company/ncds-alliance
• Instagraminstagram.com/ncdsalliance

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

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Frequently asked questions about North Carolina Down Syndrome Alliance