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HUNTER'S HOPE FOUNDATION INC
ORCHARD PARK, NY · EIN 161552315 · Form 990 · FY2025 · NTEE Z99 · Unknown · Small ($100K-$1M)
revenue
$862K
expenses
$1.1M
net assets
$1.8M
employees
6
volunteers
20
program ratio
90%
mission · from form 990

TO INCREASE PUBLIC AWARENESS, TO SUPPORT, TO FUND RESEARCH EFFORTS TO FIND A CURE FOR KRABBE DISEASE AND OTHER LEUKODYSTROPHIES, AND TO PROMOTE FAMILY VALUES TO PARENTS ALL OVER THE WORLD.

profile · synthesized from sources

Nonprofit organization dedicated to supporting families affected by Krabbe disease and other leukodystrophies while funding research for treatments and cures. Provides informational resources, emotional and financial support to affected families worldwide, and promotes public awareness. Founded in 1997 in Orchard Park, NY.

irs program accomplishments · form 990 part iii · fy2025

What they reported doing

  1. #1 primary $260K
    FAMILY ASSISTANCE - THE FOUNDATION UNDERTAKES TO GATHER AND PROVIDE CURRENT, FUNCTIONAL INFORMATION, AND SERVICE LINKAGES TO FAMILIES OF CHILDREN WITH LEUKODYSTROPHIES.THE FOUNDATION STRIVES TO ESTABLISH AN ALLIANCE OF HOPE THAT WILL NOURISH, AFFIRM, AND CONFRONT THE URGENT NEED FOR MEDICAL, AND FINANCIAL SUPPORT OF FAMILY MEMBERS AND THOSE AFFLICTED WITH LEUKODYSTROPHIES.
  2. #2 $449K
    RESEARCH - THE FOUNDATION'S GOAL IS TO SUPPORT MEDICAL/RESEARCH EFFORTS THAT WILL IDENTIFY NEW TREATMENTS, THERAPIES, AND ULTIMATELY, A CURE FOR KRABBE DISEASE AND OTHER LEUKODYSTROPHIES.
named programs · 2 · from sources

What they call their work

Family Assistance
Provides current, functional information and service linkages to families of children with leukodystrophies; offers medical, financial, and emotional support
Research
Supports medical research efforts to identify new treatments, therapies, and ultimately a cure for Krabbe disease and other leukodystrophies
activities · 2 groups

What they do

  • Genetic and Neurological Disease Research Funding 1 activity
    • Funding medical research for treatments and cures for Krabbe disease and other leukodystrophies
      Provides financial support for research initiatives aimed at identifying new treatments, therapies, and ultimately a cure for Krabbe disease and other leukodystrophies.
  • Familial Support for Rare Genetic Conditions 1 activity
    • Providing information and support services to families affected by leukodystrophies
      Offers current information and connects families of children with leukodystrophies to services that address medical, financial, and emotional needs.
financials · form 990 · fy2025
revenue
Total revenue$862K
Contributions & grants$746K87%
Program service revenue$00%
Investment income$116K13%
Other revenue$0
expenses
Total expenses$1.12M
Program expenses90%
Admin / overhead6%
Fundraising4%
Salaries & benefits$401K
Grants paid out$334K
Largest expense lineCompensation
balance sheet
Total assets$2.04M
Cash$114K
Investments$1.80M
Liabilities$271K
Net assets$1.77M
Liquid reserves20.5 mo
6 years on record · 2020–2025 · YoY revenue -19.8%
leadership · form 990 part vii · fy2025

Who runs it

paid leadership · 1
NameTitleHours/wkCompensation
JACQUE WAGGONER C.E.O. 40 $100K
board members · 9
  • BRAD RYE — DIRECTOR
  • DAVID KERN — DIRECTOR
  • GREG CONNORS — DIRECTOR
  • JILL KELLY — CHAIRWOMAN
  • JIM KELLY — PRESIDENT
  • PARKER BEAN — DIRECTOR
  • PAUL BOSER — TREASURER
  • PHIL MAY — DIRECTOR
  • STEVEN SCHMITT — DIRECTOR
strategies · 2

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-Driven Research Funding
    methodology: awareness_and_research_funding
    By increasing public awareness and advocating for family-centered values, we generate funding and momentum for research into cures because heightened visibility leads to greater donor engagement and research investment.
  • Integrated Family Support Model
    methodology: family_support_alliance
    By providing coordinated medical, financial, and emotional support, we improve family resilience and care outcomes because addressing multiple dimensions of need simultaneously reduces systemic burden and improves treatment adherence.