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
EIN
82-1953231
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.
Communication
Programs and 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?
Website
Creating a website to raise awareness of CTNNB1 Syndrome.
Meetups
Provide a platform for virtual meetups and coordinate meetings.
Research Support
This program is geared toward funding research support activities, including writing letters of support for researchers, creating and disseminating research surveys, and related activities.
Raising Awareness
This program is geared towards marketing our organization through T-shirt sales, facebook marketing, and related activities.
Where we work
External reviews
Our results
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
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)
What are the organization's key strategies for making this happen?
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)
What are the organization's capabilities for doing this?
Our board of directors includes members with both technical expertise and fundraising experience. In addition, the board also includes family members with medical expertise.
How will they know if they are making progress?
We will do a quarterly assessment to determine our progress toward our goals.
What have they accomplished so far and what's next?
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
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild 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
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CTNNB1 SYNDROME AWARENESS WORLDWIDE
Board of directorsas of 3/29/2020
Ms. Mariana Parks
Mr. Anthony Rose
Miami University
Bethany D’Alberto
Kristina Richard
Mariana Parks
Lauren Cochran
ACCT
Annie Wood
Patrice Bradley
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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