named programs · 5 · from sources
What they call their work
ASXL3 Antibody Development
Funds the development of ASXL3 anti-bodies at Vanderbilt University as part of a scientific toolkit to accelerate BRS/ASXL3 research
BRS Family Meetings
Annual gatherings that bring together BRS-affected families, researchers, and clinicians to share information, conduct evaluations, and advance research; first held in NYC in 2018 with 24 families from 6 countries
Research Funding at University of Michigan
Supports Dr. Stephanie Bielas’s lab in studying BRS and developing models to understand neurodevelopmental impacts of ASXL3 mutations
Research Support at Columbia University
Funds research led by Dr. Wendy Chung through the TREATMENT program to study rare diseases including BRS
Simons Searchlight Partnership
Collaborates with Simons Searchlight to collect natural history data from BRS families, aiming to enroll 100 families in the registry to support research
activities · 4 groups
What they do
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Rare Genetic Disease Research and Advocacy 4 activities
- Advocating for rare disease research and information sharingPromotes intensified research and improved information exchange among medical professionals and families affected by rare genetic syndromes, advocating for broader scientific and clinical engagement with BRS and related conditions.
- Conducting research on Bainbridge-Ropers Syndrome and ASXL3 gene mutationsIdentifies effective therapies and a cure for Bainbridge-Ropers Syndrome through research initiatives, including natural history data collection from 100 families in partnership with Simons Searchlight and contributions to early clinical understanding of the condition. The organization itself conducts or directly engages in research efforts to advance scientific knowledge of BRS and ASXL3.
- Providing educational resources on rare genetic disordersOffers information about Bainbridge-Ropers Syndrome and the ASXL3 gene through a mailing list, website, and newsletters, enhancing public and family understanding of the genetic basis and clinical aspects of rare disorders.
- Supporting families affected by Bainbridge-Ropers SyndromeProvides direct support to families through communication channels including a website, Facebook group, blog, social media hashtags, and email, connecting nearly 200 families globally. Also distributes a bi-annual newsletter and maintains a shared spreadsheet documenting clinical and developmental observations to guide newly diagnosed families.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding pediatric rare disease research and therapy developmentProvides financial support for research into therapies and cures for rare genetic disorders, including funding the development of ASXL3 antibodies at Vanderbilt University and supporting research at Dr. Bielas’s lab at the University of Michigan focused on histone H2A ubiquitin inhibition as a potential therapy for ASXL3 mutations.
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Patient and Researcher Conferences 1 activity
- Organizing family meetings for BRS-affected families and researchersHosts and organizes annual BRS Family Meetings, including the first meeting in New York City in 2018 with 24 families from 6 countries and the 3rd Annual meeting at UCLA in coordination with the ASXL Conference, facilitating connections between families, doctors, and researchers.
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Specialized Therapy for Children with Disabilities 1 activity
- Supporting therapeutic interventions for individuals with rare syndromesProvides ongoing therapeutic support including physical, speech, occupational, aquatic, and equine therapies for individuals diagnosed with rare genetic syndromes such as Bainbridge-Ropers Syndrome.
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financials · form 990 · fy2023
revenue
Total revenue$0
Contributions & grants$0—
Program service revenue$0—
Investment income$0—
Other revenue$0
expenses
Total expenses$0
Program expenses48%
Admin / overhead52%
Fundraising0%
Salaries & benefits$0
Grants paid out$0
Largest expense lineFacilities
balance sheet
Total assets$74K
Cash$66K
Investments$0
Liabilities$0
Net assets$74K
2 years on record · 2020–2023 · YoY revenue -100.0%
leadership · form 990 part vii · fy2023
Who runs it
board members · 3
- GRACILEIA MORRISON — VICE CHAIRMAN
- SCOTT MORRISON — CHAIRMAN & TREASURY
- SUSAN MORRISON — SECRETARY
relationships · 21
Who they work with
- ARRE Foundation Partner — Co-hosted the 3rd Annual BRS Family Meeting with the ASXL Conference
- ARRE Foundation Partner — Coordinating the 3rd Annual BRS Family Meeting with the ASXL Conference
- Baylor College of Medicine Partner — Collaborated with the organization in whole exome sequencing that led to Della's diagnosis of Bainbridge-Ropers Syndrome.
- Bob Conrad Partner — Co-host of the Leo's Lighthouse Foundation Golf & Dinner Benefit
- Columbia University Partner — Partners with Dr. Wendy Chung and supports rare disease research through the TREATMENT program
- Columbia University Partner — Supporting Dr. Wendy Chung's rare disease research and co-hosting BRS Family Meetings
- Dr. Bainbridge Partner — Worked with the researcher to participate in a genetic study and later became a point of contact for other families with Bainbridge-Ropers Syndrome.
- Dr. Matthew Bainbridge Partner — Collaborates with or acknowledges the research contributions of Dr. Matthew Bainbridge in the discovery and documentation of ASXL3 gene mutations related to BRS.
- John Moscrip Partner — Co-host of the Leo's Lighthouse Foundation Golf & Dinner Benefit
- Matt Lorch Partner — Special guest MC for the Leo's Lighthouse Foundation Golf & Dinner Benefit
- Medical Community Partner — Collaborates with medical professionals to advance research and understanding of rare genetic syndromes.
- Overlake Golf Club Partner — Host venue for the annual Golf Tournament & Benefit in Medina, Washington.
- Scott Morrison Partner — Co-host of the Leo's Lighthouse Foundation Golf & Dinner Benefit
- Seattle Children’s Hospital Partner — Provided ongoing clinical care and assessments for Benton across multiple specialties.
- Simons Foundation Partner — Collaborates with Simons Searchlight to collect natural history data on BRS families
- Simons Foundation (Searchlight) Partner — Collaborating to promote data collection and research on ASXL3 and Bainbridge-Ropers Syndrome
- Texas Children’s Hospital Partner — Collaborated with the hospital in whole exome sequencing that led to Della's diagnosis of Bainbridge-Ropers Syndrome.
- University of Michigan Partner — Funding Dr. Stephanie Bielas's lab for research on neurodevelopmental disorders related to ASXL3 mutations
- University of Michigan Partner — Funds research in Dr. Stephanie Bielas’s lab on ASXL3-related neurodevelopmental disorders
- Vanderbilt University Partner — Funding development of ASXL3 antibodies for rare disease research
- Vanderbilt University Partner — Funds development of ASXL3 antibodies for BRS/ASXL3 research
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-Led Research and Advocacy Partnershipmethodology: family_research_collaborationBy uniting families and researchers in collaborative knowledge-sharing and data collection, the foundation accelerates research and improves care for rare genetic conditions, because lived experience and scientific inquiry together generate more actionable insights than either could alone.
- Peer-Based Family Support Networkmethodology: family-led_support_networkBy connecting newly diagnosed families with experienced ones through peer-to-peer networks, the foundation improves family resilience and care navigation, because shared lived experience reduces isolation and accelerates learning better than top-down information delivery.
- Rare Disease Research Acceleration via Private Fundingmethodology: rare-disease-advocacy-through-private-fundingBy directing charitable donations toward research and clinical data aggregation, the foundation overcomes systemic underfunding in rare disease science, enabling faster therapeutic development where traditional funding mechanisms fail.