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YELLOW BRICK ROAD PROJECT INC
NEW YORK, NY · EIN 320535896 · Form 990EZ · FY2022 · Micro (<$100K) · yellowbrickroadproject.org
revenue
$2K
expenses
$16K
net assets
$0
employees
—
mission · from form 990

The Yellow Brick Road Project 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

Nonprofit organization led by parents of patients, dedicated to advancing research, raising awareness, and connecting families affected by HNRNPH2 mutations. The organization funds scientific studies, supports a natural history study at Columbia University, and facilitates global collaboration among families and researchers. It also organizes annual conferences, awareness campaigns, and maintains a patient registry to accelerate the path toward treatments and a cure.

named programs · 4 · from sources

What they call their work

2021 Awareness Week & Virtual Walk
One-week global campaign featuring a virtual walk and social media activities to raise visibility and funds for HNRNPH2 research
Annual Conference & Family Meeting
Annual virtual gathering connecting families, researchers, and clinicians to share updates on research, treatment development, and family support strategies
Matrix Patient Registry
Collaborative patient registry developed with Across Healthcare’s Matrix platform to collect and organize medical and genetic data from individuals with HNRNPH2 mutations to support research and drug development
Natural History Study
Ongoing research study led by Dr. Jennifer Bain at Columbia University to track the progression of HNRNPH2-related disorder through remote neurological assessments, surveys, and video submissions from enrolled families
activities · 5 groups

What they do

  • Rare Genetic Disease Research and Advocacy 6 activities
    • Conducting and publishing original research on HNRNPH2
      Leads and publishes scientific research characterizing HNRNPH2-related neurodevelopmental disorder, including a study of 33 individuals with de novo pathogenic variants and clinical feature analysis using caregiver reports. Published findings in peer-reviewed journals such as Neurology Genetics.
    • Conducting awareness campaigns for HNRNPH2 and ultra-rare diseases
      Runs public awareness initiatives targeting both general and scientific audiences, including participation in Rare Disease Day, HNRNPH2 Awareness Week, and media recognition in outlets like Pharmacy Times. Won joint grand prize in NORD’s Show Your Stripes video contest.
    • Facilitating global family support and advocacy through regional delegates
      Maintains an international network of family delegates across Europe, Asia, Israel, Russia, Japan, Australia, and the U.S. who provide localized support, raise awareness, advocate for affected children, and share information via blogs and outreach.
    • Operating a patient registry and natural history study for HNRNPH2
      Manages a patient registry in partnership with Matrix to collect clinical data on HNRNPH2-Related Disorder and conducts a natural history study that had enrolled 53 individuals as of 2021. Engaged patients in assessments and biosample contributions during family meetings.
    • Partnering with research consortia and networks for data sharing
      Collaborates with Simons Searchlight, COMBINEDBrain, and the Cerebral Palsy Research Network to pool data, biosamples, and research efforts to accelerate understanding and treatment of rare neurodevelopmental disorders including HNRNPH2.
    • Producing educational materials and communications for families
      Publishes quarterly newsletters, animated explainer videos (with subtitles in eight languages), and articles authored by board members to educate families and the public about HNRNPH2, genetic diagnosis, and clinical decision-making.
  • Genetic and Neurological Disease Research Funding 2 activities
    • Funding awareness and identification initiatives for HNRNPH2
      Finances programs that raise public and scientific awareness of HNRNPH2 mutations and support the identification of individuals affected by the disorder to expand global understanding and diagnosis.
    • Funding research on HNRNPH2-related neurodevelopmental disorder
      Provides financial support for research initiatives aimed at identifying, understanding, treating, and ultimately curing HNRNPH2-related neurodevelopmental disorder. This includes funding studies on genetic mutations and therapeutic development.
  • Language Access Services 1 activity
    • Expanding access to HNRNPH2 resources through multilingual offerings
      Increases global accessibility of patient registry surveys and educational content by offering materials in multiple languages, including five languages for registry surveys by October 2022 and eight-language subtitles for animated videos.
  • Patient and Researcher Conferences 1 activity
    • Hosting annual conferences and family meetings for the HNRNPH2 community
      Organizes annual in-person and virtual conferences and family meetings that bring together affected families, researchers, and clinicians. Events include Jacksonville (in-person) and virtual formats, with programming supporting education, connection, and research engagement.
  • Charity Event Organization 1 activity
    • Organizing fundraising events to support HNRNPH2 research
      Hosts physical and virtual fundraising events such as a 100km sponsored walk along the Grand Union Canal, a virtual walk raising over $17,300, and Rare Disease Day campaigns that raised over $10,000 for Andlit Therapeutics and over $20,000 during Awareness Week.
financials · form 990EZ · fy2022
revenue
Total revenue$2K
Contributions & grants$2K100%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$16K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out$16K
balance sheet
Total assets$0
Cash—
Investments—
Liabilities—
Net assets$0
3 years on record · 2020–2022 · YoY revenue -97.2%
relationships · 33

Who they work with

  • Across Healthcare Partner — Partnered to launch a patient registry using their Matrix rare patient platform.
  • Andlit Therapeutics Partner — Collaborating on an ongoing research project funded by Rare Disease Day fundraising.
  • Andlit Therapeutics Partner — Funded a two-year research project and collaborates on scientific presentations.
  • Andlit Therapeutics Partner — Has a research agreement for which YBRP is fulfilling obligations using donated funds.
  • BBC Partner — Featured in an interview on BBC Radio discussing the organization's mission and activities.
  • COMBINEDBrain Network — Collaborates on strategic scientific review and multilingual translation of patient surveys.
  • COMBINEDBrain Network — Yellow Brick Road Project sits on the Board of Directors of COMBINEDBrain, a consortium focused on outcome measures and biomarkers for neurodevelopmental disorders.
  • COMBINEDBrain Partner — Collaborates with COMBINEDBrain on research and awareness initiatives for rare neurological conditions.
  • COMBINEDBrain Partner — YBRP is a founding member of this consortium focused on accelerating treatments for rare non-verbal neurodevelopmental disorders.
  • Cerebral Palsy Research Network Partner — Collaborates with YBRP to improve care and research for patients with both cerebral palsy and HNRNPH2.
  • Columbia University Partner — Collaborates on the Natural History Study led by Dr. Jennifer Bain.
  • Columbia University Partner — Hosts the HNRNPH2 Natural History Study led by Dr. Jennifer Bain and Research Assistant Olivia Thornburg.
  • Columbia University Irving Medical Center Partner — Research partner in advancing understanding and treatment of HNRNPH2 genetic variations.
  • Cydan Partner — Collaborated through shared participation in the 2019 Family Meeting, with Cydan's speaker contributing to a broader discussion on rare disease communities.
  • Dr. Wendy Chung Partner — Collaborates with the organization to support families affected by HNRNPH2 mutations and advance research understanding.
  • FaceBase/One Child Every Child Partner — Partnership aimed at using facial phenotyping technology to identify individuals with HNRNPH2 mutations.
  • Genetic Alliance UK Network — Member of a UK-based alliance of over 200 patient organizations focused on improving services and advancing research in genetic medicine.
  • Global Advocacy Alliance Network — Member of a global network of nonprofits working to improve outcomes for rare disease communities through collaboration.
  • HNRNPH2 Network — Organization focused on research and awareness related to HNRNPH2 genetic mutations.
  • Krembil Research Institute Partner — Engages in research on HNRNPH2-Related Disorder and presents at YBRP events.
  • MUNCH Token Community Partner — Selected Yellow Brick Road Project as Charity of Choice and provided a donation to support research.
  • Matrix Partner — Partnered to launch and manage the YBRP patient registry.
  • NORD Partner — Participated in the NORD Show Your Stripes Rare Disease Day video contest and was named joint grand prize winner.
  • NORD Partner — Represented at YBRP events by staff member Aliza Fink.
  • National Organization for Rare Disorders Network — YBRP is pursuing membership in NORD to connect with rare disease organizations, researchers, and regulators.
  • Ovid Therapeutics Partner — Participates in YBRP conferences to share expertise on HNRNPH2 research.
  • Palo Alto Medical Foundation Partner — Nicole Glenn practices General Pediatrics with the Palo Alto Medical Foundation while serving as West Coast delegate for YBRP.
  • Simons Searchlight Partner — Collaborates with YBRP to collect and share data and biosamples for HNRNPH2 research.
  • Simons Searchlight Partner — Shared information about HNRNPH2 during Awareness Week to increase visibility of the condition.
  • St Jude Children’s Research Hospital Partner — Conducts HNRNPH2 research using mouse models and presents findings at YBRP events.
+ 3 more
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.

  • Clinician-Family Knowledge Integration
    methodology: clinician_family_partnership
    By combining caregiver-reported clinical insights with pediatric expertise, the organization improves clinical characterization and differential diagnosis of HNRNPH2-related disorders because frontline family observations and medical validation together produce more accurate and actionable phenotypic profiles than either source alone.
  • Consortium-Based Research Acceleration
    methodology: consortium_based_research_acceleration
    By co-founding and participating in cross-disorder rare disease consortia, the organization accelerates treatment development because shared data, pooled advocacy resources, and collaborative research infrastructure reduce duplication and increase scientific momentum beyond what single-condition groups can achieve.
  • Diagnostic Resolution as Foundational Care
    methodology: diagnostic_odyssey_resolution
    By advancing genetic diagnosis for HNRNPH2-related disorders, the organization improves patient care and catalyzes research because ending the diagnostic odyssey enables access to tailored support, clinical trial eligibility, and community-building, regardless of age at diagnosis.
  • Family-Engaged Research Acceleration
    methodology: family_engaged_research
    By connecting affected families and aggregating their lived experiences, clinical data, and genetic information, the organization accelerates research and treatment development for ultra-rare HNRNPH2-related disorders because collective family participation enables larger-scale data generation and biotech engagement than isolated cases allow.
  • Parent-Led Advocacy as Innovation Catalyst
    methodology: parent_led_advocacy
    By centering parent-led leadership and family storytelling in advocacy, the organization drives awareness, influences research priorities, and fosters industry partnerships because lived experience generates urgency, trust, and targeted action that traditional research models lack.