Disease, Disorders, Medical Disciplines
CTNNB1 SYNDROME AWARENESS WORLDWIDE
Providing information about symptoms, diagnosis, treatments and therapies; and connecting affected families.
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
6730451850
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
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
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
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
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
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
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
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 of Directors
as of 3/29/2020
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
SOURCE: Self-reported by organization
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 organizationBOARD 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 organizationGender
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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