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DOWN SYDROME ADVOCACY FOUNDATION
Hauppauge, NY · EIN 331054617 · Form 990EZ · FY2025 · NTEE P82 · Human Services · Micro (<$100K) · dsafonline.org
revenue
$74K
expenses
$38K
net assets
$86K
employees
—
mission · from form 990

THE DOWN SYNDROME ADVOCACY FOUNDATION (DSAF) IS DEDICATED TO ENHANCING THE LIVES OF INDIVIDUALS WITH DOWN SYNDROME THROUGH ADVOCACY AND SUPPORTING INCLUSION WITHIN SCHOOLS, COMMUNITIES, AND THE WORK PLACE

profile · synthesized from sources

The Down Syndrome Advocacy Foundation (DSAF) is a nonprofit dedicated to enhancing the lives of individuals with Down syndrome through advocacy and inclusion in schools, communities, and workplaces. Founded by families of individuals with Down syndrome, the organization provides support through monthly virtual workshops, technical assistance for school inclusion, and community events. DSAF operates primarily in New York, with a focus on empowering families and promoting societal acceptance.

named programs · 5 · from sources

What they call their work

Annual Golf Outing
Fundraising event at The Rock Golf Club in Wading River, NY, supporting inclusion initiatives and featuring sponsorships, contests, and dinner
Brain Train Series
Five-part webinar series led by Dr. Brian Skotko offering practical strategies to support long-term cognitive wellness in individuals with Down syndrome
Going Places Program
Supports community events that bring together teenagers and young adults with and without disabilities for inclusive social activities
Monthly Virtual Workshops
Free virtual Zoom sessions covering topics such as AAC (Augmentative and Alternative Communication) and cognitive wellness, designed to empower families and professionals
Technical Assistance Program
Provides eligible families with vouchers for up to 15 hours of technical assistance to support inclusion of children with Down syndrome in general education settings
activities · 8 groups

What they do

  • Disability Rights Advocacy & Self-Advocacy Empowerment 1 activity
    • Advocacy for inclusion of individuals with Down syndrome
      Advocates for individuals with Down syndrome to support inclusion in schools, communities, and workplaces through public campaigns and engagement initiatives.
  • Charity Event Organization 1 activity
    • Conducts fundraising and awareness campaigns
      Organizes fundraising initiatives such as Super Bowl squares and solicits donations to support programming, while distributing bracelets and promoting awareness events like "Lots of Socks" and "Dress Down" days.
  • Autism and Neurodiversity Family Support Services 1 activity
    • Hosts monthly meetings and workshops for families and professionals
      Provides ongoing support and education to families and professionals through monthly in-person and virtual workshops covering topics such as inclusive strategies, cognitive wellness, and augmentative communication for individuals with Down syndrome.
  • Autism & Neurodiversity Education Workshops 1 activity
    • Organizes annual conference on best practices in education for students with Down syndrome
      Hosts an annual conference focused on best practices in the education of students with Down syndrome, bringing together professionals and families to share knowledge and strategies.
  • Charity Golf Tournament Fundraiser 1 activity
    • Organizes annual golf outing to support inclusion initiatives
      Hosts an annual golf outing event to raise awareness and funds for inclusion of individuals with Down syndrome in schools and communities, including dinner service through a partnership with Pulcinella on the Green.
  • Adaptive Sports Programs 1 activity
    • Organizes social inclusion events for youth with and without disabilities
      Hosts social inclusion events designed to foster connections among teenagers and young adults with and without disabilities, promoting community integration.
  • Special Education Support Services 1 activity
    • Provides educational resources and technical assistance to families and school districts
      Compiles and shares reference materials, resource links, and offers vouchers for up to 15 hours of technical assistance per family to support school districts in serving children with Down syndrome in general education settings.
  • Specialized Summer Camps for Disabilities 1 activity
    • Runs iCan Bike program to teach bicycle riding skills to individuals with disabilities
      Organizes a 5-day therapeutic camp offering five 75-minute daily sessions to teach individuals with disabilities, including Down syndrome, how to ride a conventional two-wheel bicycle.
financials · form 990EZ · fy2025
revenue
Total revenue$74K
Contributions & grants$20K28%
Program service revenue$23K31%
Investment income$00%
Other revenue$4
expenses
Total expenses$38K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$0
Grants paid out$0
balance sheet
Total assets$86K
Cash—
Investments—
Liabilities—
Net assets$86K
6 years on record · 2020–2025 · YoY revenue +67.1%
leadership · form 990 part vii · fy2025

Who runs it

paid leadership · 2
NameTitleHours/wkCompensation
Melissa Goldhammer Secretary 2 $6K
Jenny Anderson Tresurer 2 $3K
board members · 4
  • Barbara Lanzetta — Board Member
  • John McElhatton — Board Member
  • Marlene Rosenson — Board Member
  • Michael Kelly — Board Member
relationships · 47

Who they work with

  • Alexander’s Angels Partner — Resource partner listed for families and professionals
  • CAST Partner — Resource partner for Universal Design for Learning (UDL)
  • Center for Parent Information and Resources Partner — Resource partner offering information and support for parents
  • Center on Technology and Disability Partner — Resource partner providing technology-related support and training
  • Cronin & Cronin Law Firm, PLLC Partner — Birdie sponsor of the annual golf outing.
  • Down Syndrome Advocacy Foundation Network — Current members of the foundation are eligible to receive technical assistance vouchers.
  • Down Syndrome Advocacy Foundation Network — Self-referential membership in its own network of families and advocates.
  • Down Syndrome Diagnosis Network Partner — Resource partner supporting families after diagnosis
  • Down Syndrome Education International Partner — Resource partner providing evidence-based educational resources
  • Down Syndrome International Network — Recognizes and participates in a global awareness day designated by Down Syndrome International.
  • Down Syndrome International Partner — Resource partner promoting global advocacy and awareness
  • Facebook Partner — Uses Facebook for outreach and engagement.
  • GiGi's Playhouse Long Island Partner — Local partner organization providing programs and support
  • Global Down Syndrome Foundation Partner — Resource partner focused on research and policy advocacy
  • Holiday Inn Plainview Partner — Sponsor of the iCan Bike Camp program.
  • I’m Determined Partner — Resource partner promoting self-determination for youth with disabilities
  • Kelly Development Partner — Sponsor of the annual golf outing and other events.
  • Landscapes by Henry Partner — Sponsor of the iCan Bike Camp program.
  • Local colleges Partner — Engages college students from psychology, education, special education, speech pathology, occupational therapy, physical therapy, and social work programs to participate in events.
  • Local high schools Partner — Collaborates with high school clubs such as community service clubs, National Honor Society, and student government to participate in inclusion events.
  • Long Island Advocacy Center Partner — Local advocacy partner serving the Long Island community
  • Long Island Communities of Practice Partner — Local partner supporting professional collaboration and training
  • Lumind Foundation Partner — Resource partner supporting individuals with intellectual and developmental disabilities
  • Mineola Bicycle Partner — Sponsor of the iCan Bike Camp program.
  • NYC PBA Partner — Albatross sponsor of the annual golf outing.
  • National Down Syndrome Congress Partner — National resource and advocacy partner
  • National Down Syndrome Society Partner — National advocacy and support partner
  • Office for People with Developmental Disabilities Government — State government agency providing services and policy guidance
  • Office of Persons with Developmental Disabilities Government — Provides grant funding for DSAF workshops and requires demonstration of service to individuals with TABS numbers and Family Support Services to maintain funding.
  • Office of Persons with Developmental Disabilities (OPWDD) Government — Collaborates with OPWDD to maintain funding by collecting TABS numbers from participants in New York State.
+ 17 more
strategies · 3

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Education and Caregiver Empowerment
    methodology: caregiver_education_model
    By providing caregivers with practical, clinically-informed education through webinars and curated resources, the organization improves cognitive wellness and home-based support for individuals with Down syndrome, because equipping caregivers with accessible knowledge strengthens daily developmental support.
  • Inclusion Through Advocacy
    methodology: advocacy-for-inclusion
    By advocating for the inclusion of individuals with Down syndrome in schools, workplaces, and communities, the organization improves their quality of life and social acceptance, because systemic integration fosters dignity, belonging, and better developmental outcomes.
  • Inclusive Settings for Development
    methodology: inclusion_through_peer_interaction
    By promoting inclusive environments in natural settings, the organization enhances developmental outcomes and community acceptance for individuals with Down syndrome, because peer interaction in integrated contexts improves learning, social skills, and societal attitudes.