COMMON MAPS
Map version new-york activity top-down
Main site Contact
Menu
↑ parent activity group ·
research dossier

BELOVEDS A NANIA FOUNDATION INC
UNIONDALE, NY · EIN 922196749 · Form 990EZ · FY2025 · NTEE T01 · Philanthropy & Grantmaking · Micro (<$100K) · belovedsfoundation.org
revenue
$34K
expenses
$20K
net assets
$23K
employees
—
mission · from form 990

INCREASE GLOBAL AWARENESS FOR VASCULAR ELHERS-DANLOS SYNDROME (VEDS).

profile · synthesized from sources

BELOvEDS, A Nania Foundation Inc. is a nonprofit organization founded in memory of Angelo Nania Jr., who died from complications of vascular Ehlers-Danlos Syndrome (vEDS). The foundation is dedicated to increasing global awareness of vEDS, supporting research, and providing scholarships to students affected by the condition. It operates as a volunteer-run 501(c)(3) organization focused on advocacy and community support.

named programs · 3 · from sources

What they call their work

REDS4VEDS Campaign
Participates in the global awareness campaign held annually on the third Friday of May to raise visibility for vascular Ehlers-Danlos Syndrome
vEDS Awareness and Education
Distributes educational materials such as physician infocards, hospital signs, and first responder guides to improve emergency care for vEDS patients
vEDS Scholarship Program
Provides financial assistance to college students who have a parent or legal guardian with a confirmed vEDS diagnosis, regardless of whether the student has vEDS
activities · 4 groups

What they do

  • Disease-Specific Clinical & Patient Education 2 activities
    • Providing educational resources and clinical information about vEDS
      Distributes patient- and professional-facing resources through The VEDS Movement, including webinars, emergency guides, a physician information card with QR code to a free CME program, a hospital inpatient sign, and a quick-reference guide for first responders. Also provides detailed clinical information about vEDS, including genetics, multisystem impacts, diagnostic indicators, and life expectancy.
    • Raising awareness of vascular Ehlers-Danlos syndrome (vEDS)
      Conducts awareness campaigns and participates in annual observances such as Aortic Dissection Awareness Day on September 19 and REDS4VEDS Day on May 19 to increase global understanding of vascular Ehlers-Danlos syndrome. Also highlights accurate media portrayals, such as in The Good Doctor, to educate the public.
  • Financial Aid and Scholarship Access Programs 1 activity
    • Funding and administering scholarships for students affected by vEDS
      Operates a scholarship program for college students living with vEDS or those who have a parent or guardian with a confirmed diagnosis. The Scholarship Committee reviews applications through essays or video reels, verifies information, selects recipients, and allows eligible students to reapply annually. Recipients are formally announced and shared via social media.
  • Rare Genetic Disease Research and Advocacy 1 activity
    • Funding research into treatments for vascular Ehlers-Danlos syndrome (vEDS)
      Raises funds specifically to support research into treatments for vascular Ehlers-Danlos syndrome (vEDS), a rare genetic disorder with no current cure.
  • Charity Event Organization 1 activity
    • Fundraising to support vEDS awareness and community initiatives
      Organizes fundraising events such as the HeartWorks Gala and a 2022 fundraiser to support The VEDS Movement, with plans to continue hosting similar events for the vEDS community.
financials · form 990EZ · fy2025
revenue
Total revenue$34K
Contributions & grants$21K62%
Program service revenue——
Investment income$1560%
Other revenue—
expenses
Total expenses$20K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out$12K
balance sheet
Total assets$23K
Cash—
Investments—
Liabilities—
Net assets$23K
3 years on record · 2023–2025 · YoY revenue +60.7%
relationships · 16

Who they work with

  • Angelo Nania Partner — Youth Ambassador serving in an advisory capacity on the Scholarship Committee.
  • Annabelle's Challenge Partner — Connects vEDS patients with resources through collaboration with Annabelle's Challenge, a UK-based nonprofit serving the vEDS community.
  • FIGHT vEDS Partner — Shares resources and information with FIGHT vEDS, a nonprofit focused on supporting vEDS patients and disseminating research and treatment information.
  • Nassau Reptile Expo Partner — Sponsor associated with BELOVEDS, A Nania Foundation Inc. in 2026
  • P&S Ravioli Company Partner — Sponsor at the Joan Rivers Level for BELOVEDS, A Nania Foundation Inc. in 2026
  • REDS4VEDS Partner — Collaborates with REDS4VEDS Day campaign to raise awareness of vascular Ehlers-Danlos Syndrome.
  • Rigney Refrigeration Heating & Air Conditioning Partner — Sponsor associated with BELOVEDS, A Nania Foundation Inc. in 2026
  • Rizzuto Law Firm Partner — Sponsor at the Golden Mic Level for BELOVEDS, A Nania Foundation Inc. in 2026
  • The Marfan Foundation Partner — Co-hosted the 26th Annual HeartWorks Gala to celebrate 45 years of impact in advancing research and patient care for Marfan syndrome.
  • The Marfan Foundation Partner — Collaborates through The VEDS Movement, a division of The Marfan Foundation, to provide vEDS resources and support.
  • The Nania Family Partner — Founding and supporting family of the foundation
  • The Potter Family Foundation Funder — Private foundation listed as a sponsor of BELOVEDS, A Nania Foundation Inc. in 2026
  • The VEDS Movement Partner — Organization supported through fundraising events hosted by BELOVEDS A Nania Foundation Inc.
  • Theralympic Speech, PLLC Partner — Sponsor associated with BELOVEDS, A Nania Foundation Inc. in 2026
  • TrainWorld and TrainLand Partner — Sponsor at the Richard Pryor Level for BELOVEDS, A Nania Foundation Inc. in 2026
  • naniafamily@belovedsfoundation.org Partner — Primary contact for scholarship inquiries and coordination.
strategies · 5

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.

  • Awareness-Raising to Improve Diagnosis and Support
    methodology: awareness_raising
    By raising public and clinical awareness of vascular Ehlers-Danlos syndrome (vEDS) and related conditions like aortic dissection, the organization aims to improve early diagnosis, reduce fatalities, and expand support systems, because increased visibility leads to faster recognition and appropriate medical responses.
  • Faith-Based and Community Fundraising to Advance Research and Treatment
    methodology: faith_based_fundraising
    By combining faith-based engagement, galas, and volunteer-driven fundraising, the organization generates financial support for vEDS research and treatment development, because community-rooted initiatives increase donor commitment and resource mobilization.
  • Flexible, Familial-Centered Scholarship Support
    methodology: flexible_support_model
    By offering scholarships that prioritize familial connection to vEDS and allow use across educational paths and institutions, the organization supports affected families holistically, because flexibility and inclusive eligibility preserve dignity and address diverse needs within the vEDS community.
  • Patient Empowerment Through Clinical and Safety Tools
    methodology: patient_empowerment
    By equipping patients and clinicians with targeted educational and safety tools—such as hospital signs and physician infocards—the organization reduces medical risks and improves care quality, because accessible, just-in-time information bridges gaps in provider knowledge and supports patient safety.
  • Youth Engagement in Governance and Advocacy
    methodology: youth_advisory_model
    By involving youth ambassadors in advisory roles, the organization ensures that emerging voices shape scholarship and advocacy efforts, because intergenerational participation increases relevance, engagement, and long-term community resilience.