Disease, Disorders, Medical Disciplines

CTNNB1 SYNDROME AWARENESS WORLDWIDE

Providing information about symptoms, diagnosis, treatments and therapies; and connecting affected families.

Dayton, OH   |  www.ctnnb1.org

Mission

Our mission is to create awareness of CTNNB1 Syndrome; provide information about symptoms, diagnosis, treatments, and therapies; and connect affected families.

Ruling year info

2017

President

Mariana Parks

Vice-President

Ms. Annie Wood

Main address

6077 Far Hills Ave #150

Dayton, OH 45459 USA

Show more addresses

EIN

82-1953231

Cause area (NTEE code) info

Birth Defects (G20)

Autism (G84)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Our mission is to create awareness of CTNNB1 Syndrome; provide information about symptoms, diagnosis, treatments and therapies; and connect affected families. We hope to provide information in a number of languages.

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?

Website

Creating a website to raise awareness of CTNNB1 Syndrome.

Population(s) Served
People with disabilities
Families
Budget
$500

Provide a platform for virtual meetups and coordinate meetings.

Population(s) Served
People with disabilities
Families
Budget
$1,500

This program is geared toward funding research support activities, including writing letters of support for researchers, creating and disseminating research surveys, and related activities.

Population(s) Served
People with disabilities
Families
Budget
$5,000

This program is geared towards marketing our organization through T-shirt sales, facebook marketing, and related activities.

Population(s) Served
People with disabilities
Budget
$2,000

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 list subscribers

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

General/Unspecified

Related Program

Website

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our goal is for our membership numbers to exceed the total number of known cases of CTNNB1 Syndrome. Currently, that number is approximately 100.

Number of press releases developed and distributed

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

General/Unspecified

Related Program

Website

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our goal is at least one newsletter or press release each quarter.

Dollars donated to support advocacy efforts

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

People with intellectual disabilities

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Our Goal is at least $100 per year per person diagnosed, with at least $50 dedicated directly to research advancement.

Number of website pageviews

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

People with disabilities

Related Program

Website

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Number of site visits

Number of people on the organization's email list

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

General/Unspecified

Related Program

Website

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of new website visitors

This metric is no longer tracked.
Totals By Year
Related Program

Website

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Charting impact

SOURCE: Self-reported by organization

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

What is the organization aiming to accomplish?

1) Create a website that will allow those with a new diagnosis to better understand the condition. (Anthony Rose) 2) To provide information for care providers, therapists, and physicians who support those with CTNNB1 Syndrome. (Anthony Rose) 3) Translate the website into multiple languages. (Anthony Rose) 4) To provide connection opportunities to those with CTNNB1 Syndrome. (Anthony Rose) 5) To support the effort of researchers in the field. (Abby Loudermilk)

1) Create a website at ctnnb1.org. (Completed) 2) Generate donations to support the website. (In process) 3) Recruit volunteers to translate the website into multiple languages. (In process) 4) Recruit medical professionals to serve on an advisory council. (In process) 5) Purchase a video conferencing solution. (Completed)

Our board of directors includes members with both technical expertise and fundraising experience. In addition, the board also includes family members with medical expertise.

We will do a quarterly assessment to determine our progress toward our goals.

1) Create a website at ctnnb1.org. (Completed) 2) Generate donations to support the website. (In process) 3) Recruit volunteers to translate the website into multiple languages. (In process) 4) Recruit medical professionals to serve on an advisory council. (In process) 5) Purchase a video conferencing solution. (Completed)

Financials

CTNNB1 SYNDROME AWARENESS WORLDWIDE
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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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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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CTNNB1 SYNDROME AWARENESS WORLDWIDE

Board of directors
as of 3/29/2020
SOURCE: Self-reported by organization
Board co-chair

Ms. Mariana Parks


Board co-chair

Mr. Anthony Rose

Miami University

Bethany D’Alberto

Kristina Richard

Mariana Parks

Lauren Cochran

ACCT

Annie Wood

Patrice Bradley

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Keywords

CTNNB1 Awareness, Autism, Advocacy, Research Support, Cerebral palsy, CP