PLATINUM2024

CTNNB1 Connect and Cure

CTNNB1 Connect and Cure

aka Advancing CTNNB1 Cures and Treatments   |   Morristown, NJ   |  https://www.curectnnb1.org/

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Mission

Finding treatments and a cure for CTNNB1 Syndrome to help children live their best lives possible while raising awareness and connecting families.

Ruling year info

2019

President

Emily Amerson

Main address

8 Loantaka Ln N

Morristown, NJ 07960 USA

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Formerly known as

Advancing CTNNB1 Cures and Treatments

EIN

83-4541448

NTEE code info

Specifically Named Diseases (G80)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

CTNNB1 Syndrome manifests in ways that impact the quality of life of affected individuals. Symptoms can include developmental delay, altered muscle tone, microcephaly, exudative vitreretinopathy, vision problems, tethered spinal cord, epilepsy, osteopenia, and sleep difficulties.

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?

Small Molecule Investigation

Research is being conducted at the Michele Jacob Lab at Tufts University. Our chief investigator is Michele H. Jacob, Ph.D along with her lab's postdoctoral scholar, Jon Alexander.

To date, the lab has completed testing of three different small molecules as corrective treatments in the mouse model of CTNNB1 syndrome. One drug has been identified as the front runner and corrects the molecular change which likely underlies remedy of the phenotypes.

Mouse work is completed and we are currently waiting for the arrival of six patient-derived IPSC cell lines to further show proof of concept.

Population(s) Served

The Jacob Lab at Tufts University has identified an RNA-based treatment that significantly restores beta-catenin levels in human neurons in culture. They will test multiple variants of this treatment to identify the most effective variant. They will then investigate the brain permeability of this variant and assess its efficacy in a CTNNB1 heterozygous mouse model.

Population(s) Served
Caregivers
People with disabilities
Caregivers
People with disabilities

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of conferences held

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people, People with intellectual disabilities, People with learning disabilities, People with physical disabilities, People with vision impairments

Related Program

Small Molecule Investigation

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

CTNNB1 Connect & Cure is dedicated to finding treatments and ultimately a cure for CTNNB1 Syndrome, while raising awareness and connecting affected families.

CTNNB1 Connect & Cure will continue to fund high-priority research for treatments and cures for CTNNB1 Syndrome, raise awareness, and build community connections.

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 identify bright spots and enhance positive service experiences, 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 collect feedback from the people we serve at least annually, 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 tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome

Financials

CTNNB1 Connect and Cure
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Operations

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

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

CTNNB1 Connect and Cure

Board of directors
as of 06/27/2024
SOURCE: Self-reported by organization
Board chair

Emily Amerson

Lauren Cochran

Sean Cochran

Nicole Dashiell

Alex Dashiell

Tony King

Effie Parks

Annie Wood

Ashley Swift

Lindsay Stevens

Paul Curmi

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? Not applicable
  • 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? Yes
  • 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 1/22/2024
info Candid has made improvements to the race and ethnicity options.

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

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 01/22/2024

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.