About The Family & Friends Down Syndrome Association of Niagara, Inc.
Three Mothers, One Shared Vision for Inclusion
The Family & Friends Down Syndrome Association of Niagara, Inc. (also known as DSA Niagara or DSAN) started in 1996–1997 when three local Niagara County mothers joined together to raise positive awareness about Down syndrome and promote the full inclusion of their children in the local school system.
In 1997, DSAN organized the first Buddy Walk of Buffalo Niagara in the historic Village of Lewiston, New York as a local kickoff of the National Down Syndrome Society (NDSS) campaign. In August 2009, the Internal Revenue Service recognized The Family & Friends Down Syndrome Association of Niagara, Inc. as a tax-exempt 501(c)(3) public charity under federal Employer Identification Number 80-0265472.
Mission, Vision & Four Pillars of Community Advocacy
As established in our founding bylaws and reaffirmed in our 2024–2025 community platform, our primary objective is that every person born with Down syndrome be afforded opportunities to maximize their potential, realize their life aspirations, and lead a meaningful life as a valued member of their community:
- Promote Positive Acceptance & Inclusion: Raise community-wide awareness of the unique abilities and contributions that individuals with Down syndrome make to schools, workplaces, and neighborhoods across Western New York.
- Develop Lifespan Programs & Employment Pathways: Assist in developing programs that enhance quality of life in education, employment (such as Chapter’s Coffee Cafe and Snack Bar at the Lewiston Public Library), recreation (Sunshine Team Bowling and Turn It Up for Down Syndrome concerts), transportation, and independent living.
- Support Congenital Cardiac Care & Medical Research: Provide direct out-of-state medical travel grants through our Miles of Care initiative for families traveling to Boston or Philadelphia for pediatric cardiac surgery and angiography, while upholding national NDSS research and advocacy.
- First Responders for New & Expectant Parents: Serve as a welcoming parent-child support group and first point of contact for new and expectant parents in Niagara County hospitals, distributing free educational packages (NDSS Hotline: 1-800-221-4602; Hospital Brochure: 2009 Hospital Brochure PDF).
Understanding Down Syndrome: Facts from Our Founding Charter
There are more than 400,000 people living with Down syndrome in the United States today, touching millions of lives including family members, educators, employers, healthcare professionals, and peers.
Down syndrome affects people of all ages, races, and economic levels. It is the most common chromosomal condition, occurring in approximately 1 in every 691 live births. Quality education programs, a stimulating home environment, timely congenital cardiac and medical care, and positive community support enable individuals with Down syndrome to lead fulfilling, productive lives.
- IRS BMF & Form 990-EZ Legal Name: FAMILY AND FRIENDS DOWN SYNDROME ASSOCIATION OF NIAGARA INC (THE FAMILY & FRIENDS DOWN SYNDROME ASSOCIATION OF NIAGARA INC)
- Federal EIN: 80-0265472 (501(c)(3) Public Charity, IRS BMF NTEE G25 · Program NTEE G80 / P82)
- IRS BMF Principal Liaison (c/o): Christine Sirianni (christine.sirianni@dsaniagara.org · info@dsaniagara.org)
- 2024–2025 Mailing Address: P.O. Box 159, Lewiston, NY 14092-0159
- 2021–2023 Filing Street Address: 250 S 7th Street, Lewiston, NY 14092
- National Affiliation: Only Niagara County Licensed Affiliate of The National Down Syndrome Society (NDSS)
- Chamber & United Way: Proud Member of the Niagara River Region Chamber of Commerce (NRRCC) since 2023; 2025 Funded Agency of The United Way of Greater Niagara.
Chronological Timeline of DSAN Milestones (1996–2025)
| Year / Era | Milestone & Location | Key Leaders & Verified Details |
|---|---|---|
| 1996–1997 | Founding & First Buffalo Niagara Buddy Walk in Lewiston, NY | Three Niagara County mothers unite for school inclusion and launch the annual Buddy Walk in the Lewiston Kiwanis Peach Festival Parade. |
| 2006 | Lewiston Public Library & NIOGA Lending Collection Donated | Books and DVDs donated to Lewiston Public Library (305 S. 8th St., Tel 716-754-4720) in memory of teacher Mrs. Angela R. Sirianni and The Friends & Family Foundation of “Paulie G.” Graczyk. |
| 2008–2009 | Hospital New Parent Brochure & IRS 501(c)(3) Determination | Publication of the 68 Links Digest (Jan 2008), WNY Resource List, Hospital Family Brochure, and formal IRS 501(c)(3) approval in August 2009 (EIN 80-0265472). |
| 2011–2015 | Expansion to 400+ WNY Families & Sunshine Team Bowling | Board led by Christine Sirianni (Pres.), Anne Kaphingst (VP), Bobbie Meredith (Sec.), Rich Meredith III, Wendy Graczyk, and Mary Lou Trunzo. Saturday bowling at Lewiston Frontier Lanes. |
| June 25, 2016 | First Annual Down River Run 5K & 1-Mile Walk-N-Roll | Inaugural race held 11am–3pm at Fort Niagara State Park, Youngstown, NY 14174, sponsored by Honeymoon Trail Winery to fund the Miles of Care pediatric heart travel initiative. |
| 2021–2022 | COVID-19 Safety Pause & Second Annual Down River Run Return | 24th Annual Buddy Walk paused on Sept 11, 2021 for community safety; Second Annual Down River Run 5K & 1.5 Mile Walk safely resumed in 2022. |
| 2023–2024 | NRRCC Membership, 25th Buddy Walk & 2023/2024 Down River Runs | Joined Niagara River Region Chamber of Commerce (2023); successful June 3, 2023 and June 8, 2024 Down River Run 5K races at Fort Niagara State Park; Sept 9, 2023 25th Annual Buddy Walk. |
| Dec 3, 2024 – 2025 | Chapter’s Coffee Cafe Grand Opening & United Way Partnership | Opened Chapter’s Coffee Cafe & Snack Bar in the main lobby of Lewiston Public Library (Tue/Wed/Thu/Sat 10am–12pm), partially funded as a 2025 United Way of Greater Niagara agency; 2025 Form 990-EZ reports $21,698 net assets. |
Proud Member Since 2023: Niagara River Region Chamber of Commerce (NRRCC) in Lewiston, NY.
United Way Partner: Chapter’s Cafe is partially funded by The United Way of Greater Niagara as a 2025 funded agency.