Disease, Disorders, Medical Disciplines

CTNNB1 SYNDROME AWARENESS WORLDWIDE

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

Dayton, OH

Mission

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

Ruling Year

2017

President

Mariana Parks

Vice-President

Ms. Annie Wood

Main Address

6077 Far Hills Ave #150

Dayton, OH 45459 USA

Keywords

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

EIN

82-1953231

 Number

6730451850

Cause Area (NTEE Code)

Birth Defects (G20)

Autism (G84)

Alliance/Advocacy Organizations (G01)

IRS Filing Requirement

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

Social Media

Programs + Results

What we aim to solve

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

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

SOURCE: Self-reported by organization

Website

Meetups

Research Support

Raising Awareness

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of list subscribers

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

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

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

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

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Website

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

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)

External Reviews

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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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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 & 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

Organizational Demographics

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Sexual Orientation

We do not display sexual orientation information for organizations with fewer than 15 staff.

Disability

We do not display disability information for organizations with fewer than 15 staff.

Diversity Strategies

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We track retention of staff, board, and volunteers across demographic categories
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We track income levels of staff, senior staff, and board across demographic categories
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We track the age of staff, senior staff, and board
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We track the diversity of vendors (e.g., consultants, professional service firms)
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We have a diversity committee in place
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We have a diversity manager in place
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We have a diversity plan
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We use other methods to support diversity