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International Research Consortium for the Corpus Callosum (IRC5)

aka IRC5   |   Pasadena, CA   |  irc5.org
GuideStar Charity Check

International Research Consortium for the Corpus Callosum (IRC5)

EIN: 81-3442394


Mission

The specific purpose of the IRC5 is to promote discoveries leading to the understanding of the causes, consequences, and effective interventions, for disorders of the corpus callosum and associated disorders of cerebral connectivity. Activities of the IRC5 include, but are not limited to, development and maintenance of shared research database, creation of web-based resources for facilitating research collaboration and distribution of information, recruitment and enrollment of research participants, facilitation of consortium-based research collaborations, and coordination of scientific meetings.

Ruling year info

2017

President

Lynn K. Paul PhD

Main address

530 S. Lake Ave PMB 963

Pasadena, CA 91106 USA

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EIN

81-3442394

Subject area info

Brain and nervous system disorders

Mental and behavioral disorders

Genetic conditions and birth defects

Biotechnology

Genetic research

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Population served info

Children and youth

Adults

People with disabilities

Academics

NTEE code info

Brain Disorders (H48)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

This organization is required to file an IRS Form 990-N.

Tax forms

Show Forms 990

Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Cortical Connections - Patient & Family Education

Cortical Connections is our annual series of research updates presented for patients with corpus callosum agenesis, their families, and treatment professionals. Links to recordings of presentations are posted on our website (irc5.org).

Cortical Connection 2024 is scheduled for June 27th in Chicago, Illinois (Marriott Chicago OHare, 8535 West Higgins Road, Chicago, IL 60631). Event information and registration can be found at nodcc.org.

Cortical Connections Locations:
2017 - Melbourne, Australia
2018 - Costa Mesa, California
2019 - Paris, France
2021- Global (online) hosted by team in Rio de Janeiro, Brazil
2022 - Frisco, Texas
2023 - London, England

Population(s) Served

Our primary aim is facilitating scientific collaboration and discovery through coordinated data-collection, sharing expertise & resources, and pooling our data for analysis in secondary studies. There are only a few groups around the world with well developed research programs to study corpus callosum dysgenesis. This program supports the creation and maintenance of web-based systems for resource- and data-sharing.

Population(s) Served

Where we work

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    It is difficult to find the ongoing funding to support feedback collection

Financials

International Research Consortium for the Corpus Callosum (IRC5)
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2019 info

SOURCE: IRS Form 990

Average of 0.00 over 4 years

Months of cash in 2019 info

SOURCE: IRS Form 990

Average of 18.3 over 4 years

Fringe rate in 2019 info

SOURCE: IRS Form 990

%

Average of 0% over 4 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

International Research Consortium for the Corpus Callosum (IRC5)

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

International Research Consortium for the Corpus Callosum (IRC5)

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

International Research Consortium for the Corpus Callosum (IRC5)

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of International Research Consortium for the Corpus Callosum (IRC5)’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2016
Unrestricted surplus (deficit) before depreciation $6,234
As % of expenses 610.6%
Unrestricted surplus (deficit) after depreciation $6,234
As % of expenses 610.6%
Revenue composition info
Total revenue (unrestricted & restricted) $7,255
Total revenue, % change over prior year 0.0%
Program services revenue 0.0%
Membership dues 0.0%
Investment income 0.0%
Government grants 0.0%
All other grants and contributions 100.0%
Other revenue 0.0%
Expense composition info
Total expenses before depreciation $1,021
Total expenses, % change over prior year 0.0%
Personnel 0.0%
Professional fees 92.9%
Occupancy 0.0%
Interest 0.0%
Pass-through 0.0%
All other expenses 7.1%
Full cost components (estimated) info 2016
Total expenses (after depreciation) $1,021
One month of savings $85
Debt principal payment $0
Fixed asset additions $0
Total full costs (estimated) $1,106

Capital structure indicators

Liquidity info 2016
Months of cash 73.3
Months of cash and investments 73.3
Months of estimated liquid unrestricted net assets 73.3
Balance sheet composition info 2016
Cash $6,234
Investments $0
Receivables $0
Gross land, buildings, equipment (LBE) $0
Accumulated depreciation (as a % of LBE) 0.0%
Liabilities (as a % of assets) 0.0%
Unrestricted net assets $6,234
Temporarily restricted net assets $0
Permanently restricted net assets $0
Total restricted net assets $0
Total net assets $6,234

Key data checks

Key data checks info 2016
Material data errors No

Operations

The people, governance practices, and partners that make the organization tick.

Documents
Form 1023/1024 is not available for this organization

President

Lynn K. Paul PhD

Lynn K. Paul, Ph.D. is a Senior Research Scientist at California Institute of Technology. She has ongoing neuroimaging and behavioral studies with several unique populations, notably people with agenesis / dysgenesis of the corpus callosum and people who had hemispherectomy during childhood. Dr. Paul is the founding president of the International Research Consortium for the Corpus Callosum and Cerebral Connectivity (IRC5) and a scientific advisor to Australian Disorder of the Corpus Callosum (AusDoCC), National Organization for Disorders of the Corpus Callosum (NODCC), Corpal, and the Pediatric Epilepsy Surgery Alliance (PESA). She is co-author of 'ACC and Me' and 'Emme and Me'. Dr. Paul maintains a clinical psychology practice (L.K.Paul and Associates) in Pasadena, where she sees adult outpatient clients and conducts neuropsychological assessments in individuals with callosal agenesis.

Number of employees

Source: IRS Form 990

International Research Consortium for the Corpus Callosum (IRC5)

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
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Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

International Research Consortium for the Corpus Callosum (IRC5)

Board of directors
as of 01/21/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Dr Lynn Paul

Caltech

Term: 2016 -

Paul Lockhart

Murdoch Children's Research Institute, Melbourne, Australia

Christel Depienne

University Hospital Essen, Germany

Warren S. Brown

Fuller Graduate School of Psychology, Pasadena, California

Rhonda Booth

UCL Great Ormond Street Institute of Child Health, London

Tania Attie-Bitach

Hpital Necker & Institut Imagine, Universit Paris Descartes, France

Gregor Kasprian

Medical University of Vienna, Austria

Linda Richards

Washington University in St. Louis

Fernanda Tovar-Moll

D'Or Institute for Research and Education, Brazil

Binnaz Yalcin

Institut de Gntique et de Biologie Molculaire et Cellulaire, Strasbourg

Diego Szczupak

University of Pittsburgh

Elliott Sherr

University of California San Francisco

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 1/21/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

No data

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data