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BRAVE LITTLE WARRIORS INCORPORATED
Buffalo, NY · EIN 932985951 · Form 990EZ · FY2023 · NTEE E12 · Health Care · Micro (<$100K) · bravelittlewarriors.com
revenue
$11K
expenses
$0
net assets
$11K
employees
—
mission · from form 990

The purpose of BLW is to provide funds to families affected by the rare disease, Infantile Spasms to help cover the costs stemming from the disease which can include second opinions, special needs medical equipment, travel expense, costs and procedures not covered by insurances. Our son is affected by it and wanted to help other families struggling to provide the best care for their children. This is Brave Little Warriors first year of organization.

profile · synthesized from sources

Brave Little Warriors supports families affected by infantile spasms, a rare epilepsy disorder, by providing financial assistance for medical equipment, travel, and treatments not covered by insurance. The organization also raises awareness and funds through community events like charity golf tournaments. Based in Buffalo, NY, it was founded by a family directly impacted by the condition.

named programs · 3 · from sources

What they call their work

Charity Golf Tournament
Annual fundraising event that supports families battling infantile spasms through community participation, sponsorships, and raffles
Financial Assistance Program
Provides direct financial aid to families for medical equipment, travel expenses, and treatments related to infantile spasms not covered by insurance
Infantile Spasms Awareness
Public education and advocacy initiative focused on increasing awareness during Infantile Spasms Awareness Week and beyond
activities · 7 groups

What they do

  • Genetic and Neurological Disease Research Funding 1 activity
    • Funds research on Infantile Spasms
      Raises and directs funds specifically for research into Infantile Spasms, a severe epilepsy syndrome in infants.
  • Charity Golf Tournament Fundraiser 1 activity
    • Organizes annual charity golf tournament for fundraising and awareness
      Hosts an annual charity golf tournament to raise funds and awareness for children diagnosed with severe epilepsy and families affected by Infantile Spasms.
  • Pediatric Medical Care and Research Support 1 activity
    • Provides financial assistance to families affected by Infantile Spasms
      Offers financial support for medical expenses including second opinions, specialized equipment, travel, and uninsured procedures for families affected by Infantile Spasms.
  • Adaptive Equipment Provision 1 activity
    • Provides medical equipment and care coordination for children with epilepsy
      Supplies specialized medical equipment such as car seats and bath chairs to improve safety and daily care, and supports coordination of complex medical procedures and follow-up evaluations including EEG monitoring.
  • Neurological Disability Support & Advocacy 1 activity
    • Raises awareness about Infantile Spasms
      Conducts advocacy and awareness initiatives including recognition of Infantile Spasms Awareness Week and public education campaigns to increase understanding of this rare form of epilepsy.
  • Pediatric Surgical Interventions 1 activity
    • Supports access to advanced epilepsy surgery
      Facilitates and supports families in obtaining specialized surgical interventions, including partial corpus callosotomy via laser ablation, for the treatment of severe epilepsy.
  • Uncategorized 1 activity
    • Provides medication and treatment management support
      Assists families in adjusting medication regimens for children with epilepsy, resulting in reduced seizure frequency and improved developmental outcomes.
financials · form 990EZ · fy2023
revenue
Total revenue$11K
Contributions & grants$00%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$0
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$0
Grants paid out$0
balance sheet
Total assets$11K
Cash—
Investments—
Liabilities—
Net assets$11K
1 years on record · 2023–2023
relationships · 4

Who they work with

  • Cincinnati Partner — Medical care partner for specialized epilepsy treatment and follow-up evaluation.
  • Cincinnati Partner — Medical team in Cincinnati provided treatment and ongoing management for Jordan, including titration of Vigabatrin.
  • Gonzalez family Partner — Family recipient of medical equipment support from Brave Little Warriors Incorporated.
  • Terry Hills Golf Course Partner — Host venue for the annual charity golf tournament.
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.

  • Family-Centered Financial and Practical Support
    methodology: family-centered financial support
    By providing direct financial assistance and critical medical equipment not covered by insurance, the organization reduces systemic barriers to care and improves treatment access, because financial and logistical burdens disproportionately impact families navigating rare and severe pediatric epilepsy.
  • Individualized Clinical Care Adaptation
    methodology: individualized-treatment-adaptation
    By discontinuing treatments like the ketogenic diet when they lack therapeutic benefit or hinder development, the organization prioritizes child-centered outcomes, because rigid adherence to protocols can harm developmental progress and reduce quality of life.
  • Story-Based Advocacy and Awareness
    methodology: story-based advocacy
    By centering personal narratives and lived parental experience, the organization raises public and medical awareness of infantile spasms, because authentic storytelling fosters empathy, drives engagement, and amplifies advocacy in ways clinical data alone cannot.