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YBRP INC
NEW ROCHELLE, NY · EIN 834191901 · Form 990 · FY2024 · NTEE G80 · Voluntary Health Associations · Small ($100K-$1M) · ybrp.org
revenue
$220K
expenses
$183K
net assets
$399K
employees
1
volunteers
22
program ratio
92%
mission · from form 990

YBRP INC. is a parents of patients led non-profit organization. Our primary goals are: 1) To fund research to identify, understand, treat and ultimately cure those impacted by HNRNPH2 mutations. 2) To fund initatives to raise awareness and identify more individuals with HNRNPH2 mutations. 3) To connect families impacted by HNRNPH2 in order to contribute to the understanding of the disorder.

profile · synthesized from sources

The Yellow Brick Road Project (YBRP INC) is a nonprofit organization led by parents of children with HNRNPH2 mutations. It funds research to understand, treat, and cure the disorder, raises awareness to identify more affected individuals, and connects families globally to support research and shared understanding. The organization hosts annual family meetings in the U.S. and Europe that bring together families, scientists, and clinicians.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $39K
    Family Meeting US-annual conference & family meeting joining Scientists, Researchers, and Clinicians with Families. 9 new families were reached. Benefiting treatments and research assets.
  2. #2 $38K
    Family Meeting Europe-annual conference & family meeting joining Scientists, Researchers, and Clinicians with Families. 13 new families were reached. Benefiting treatments and research assets.
named programs · 3 · from sources

What they call their work

Family Meeting Europe
Annual conference in Europe connecting families, scientists, researchers, and clinicians impacted by HNRNPH2 mutations
Family Meeting US
Annual conference in the U.S. connecting families, scientists, researchers, and clinicians to share experiences and advance research on HNRNPH2 mutations
Raising Awareness & Connecting Families
Initiative to increase public and scientific awareness of HNRNPH2 mutations and connect newly diagnosed families globally
activities · 4 groups

What they do

  • Rare Genetic Disease Research and Advocacy 1 activity
    • Family outreach and identification
      Conducts awareness and outreach efforts to identify and connect with families affected by HNRNPH2 mutations, reaching over 20 new families in one year and increasing public exposure for the genetic variation.
  • Genetic and Neurological Disease Research Funding 1 activity
    • Funding research and awareness for HNRNPH2 mutations
      Funds research initiatives aimed at identifying, understanding, treating, and curing HNRNPH2 mutations, while also supporting efforts to identify affected individuals and increase public and scientific awareness of the condition.
  • Familial Support for Rare Genetic Conditions 1 activity
    • Immediate family support post-diagnosis
      Provides rapid emotional and community support to families impacted by HNRNPH2 mutations, establishing connection within one hour of diagnosis disclosure.
  • Patient and Researcher Conferences 1 activity
    • Organizing international family and scientific conferences
      Hosts annual in-person and virtual conferences that bring together families, scientists, researchers, and clinicians affected by or studying HNRNPH2 mutations, with recent events reaching tens of new families globally.
financials · form 990 · fy2024
revenue
Total revenue$220K
Contributions & grants$220K100%
Program service revenue$00%
Investment income$290%
Other revenue$29
expenses
Total expenses$183K
Program expenses92%
Admin / overhead8%
Fundraising0%
Salaries & benefits$2K
Grants paid out$78K
Largest expense lineFacilities
balance sheet
Total assets$399K
Cash$389K
Investments$0
Liabilities$0
Net assets$399K
Liquid reserves25.6 mo
5 years on record · 2020–2024 · YoY revenue +26.1%
leadership · form 990 part vii · fy2024

Who runs it

board members · 5
  • HAIM FARKASH — Vice President
  • PAULA TYSON — Sec&Treasurer
  • ROBERT GLENN — Marketing&Comm
  • STACY PADDON — Outreach Coord
  • TRISH FLANAGAN — President
relationships · 4

Who they work with

  • Clinicians Partner — Partners with clinicians in family meetings to support treatment development and clinical understanding of HNRNPH2 mutations.
  • Dr. Wendy Chung Partner — Collaborates with the organization to support families and advance understanding of HNRNPH2 mutations.
  • Researchers Partner — Engages researchers in family meetings to gather data and support ongoing studies on HNRNPH2 mutations.
  • Scientists Partner — Collaborates with scientists in annual family meetings to advance research on HNRNPH2 mutations.
strategies · 1

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-Researcher Collaboration Model
    methodology: family_researcher_collaboration
    By connecting affected families directly with researchers and clinicians, we accelerate the understanding and treatment of HNRNPH2, because shared lived experience and scientific inquiry generate faster, more relevant discoveries than traditional research pipelines.