Impact & Measurement
Accountability & Finance
Culture & Community
Leadership & Adaptability
Adnp Kids Research Foundation
Brush Prairie WA | IRS ruling year: 2017 | EIN: 30-0964243 
An EIN is a unique nine-digit number that identifies a business for tax purposes.
An EIN is a unique nine-digit number that identifies a business for tax purposes.Organization Mission
Rare disease support, patient advocacy, education, and scientific research and funding treatment studies and drug trials for ADNP syndromeRating Information
Not currently rated
Ratings are calculated from one or more beacon scores. Currently, we require either an Accountability & Finance beacon or an Impact & Measurement beacon to be eligible for a Charity Navigator rating. Note: The absence of a rating does not indicate a positive or negative assessment; it only indicates that we have not yet evaluated this organization.
See rating report below to learn why this organization is not currently eligible.
Historical Ratings 
Historical Ratings 
Charity Navigator's ratings previously did not consider Leadership & Adaptability, Culture & Community, or Impact & Measurement. The historic rating mainly reflects a version of today’s Accountability and Finance score. More information on our previous rating methodologies can be found on our rating methodology page.
Rating histories are available for a growing number of rated organizations. Check back later to see if this organization has a rating history!
Rating Report
Accountability & Finance
Not Currently Scored
Unknown Reason
Charity Navigator is unable to evaluate this nonprofit at this time. Please see our Encompass Rating methodology for more information.
Additional Information
Total Revenue and Expenses - Data Available
Total Revenue and Expenses - Data Available
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
Salary of Key Persons - Data Available
Salary of Key Persons - Data Available
Presented here are up to five of this organization's highest compensated employees. This compensation data includes salary, cash bonuses, and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting
Sandra Sermone, President
$0
Genie Egerton-warburton, Vice President
$0
Tim Mosier, Treasurer
$0
Debbie Abraham, Secretary
$0
Source: IRS Form 990 (page 7), filing year 2023
IRS Published Data (Business Master File) - Data Available
IRS Published Data (Business Master File) - Data Available
Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website
Foundation Status:
Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code: 15)
Affiliation:
Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)
Data Sources (IRS Forms 990) - Data Available
Data Sources (IRS Forms 990) - Data Available
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage accountability and finance data from it to form Encompass ratings. Click here to search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (Adnp Kids Research Foundation) or EIN (300964243) in the 'Search Term' field.
Impact & Measurement
Not Currently Scored
Adnp Kids Research Foundation cannot currently be evaluated by our Impact & Measurement methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Culture & Community
Score
83
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
Metrics
Full Credit
Partial Credit
No CreditConstituent Feedback - Data Available100/100 points
Constituent Feedback - Data Available100/100 points
33.33% of beacon score
This organization reported that it is collecting feedback from the constituents and/or communities it serves. The methodology leveraged for Constituent Feedback is based on The Core Principles of Constituent Feedback, which describes listening and responding well to feedback. Charity Navigator participates in a consortium with other feedback experts and leading nonprofit infrastructure platforms to drive Constituent Feedback's advancement, promotion, and data collection.
How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, Other means
What challenges does your organization face in collecting feedback from the people you serve?
We don't have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection, Other means
Equity Practices - Data Available75/100 points
Equity Practices - Data Available75/100 points
66.67% of beacon score
This organization's score of 75 is a passing score. The organization reported that it is currently only implementing 2 Equity Practices.
The Equity Strategies Checklist, developed by Equity in the Center, consists of practices and policies that promote racial equity in operations and programs. This data is collected in partnership with Candid.
| Equity Practices (1/7) | |
We review compensation data across the organization (and by staff levels) to identify disparities by race. | |
We ask team members to identify racial disparities in their programs and/or portfolios. | |
We analyze disaggregated data and root causes of race disparities that impact the organization/'s programs, portfolios, and the populations served. | |
We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support. | |
We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders. | |
We disaggregate data by demographics, including race, in every policy and program measured | |
We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization. | |
| Equity Policies and Procedures (1/7) | |
We use a vetting process to identify vendors and partners that share our commitment to race equity. | |
We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions. | |
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. | |
We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability. | |
We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team. | |
We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization. | |
Leadership & Adaptability
Score
100
This beacon provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
- Strategic Partnerships
- Networks of Collective Impact Efforts
- Thought Leadership
- Raising Awareness
Metrics
Full CreditPartial CreditNo CreditMission 10/10 points
Mission 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
Note: The organization did not respond to this question.
Vision 10/10 points
Vision 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
Note: The organization did not respond to this question.
Source: Nonprofit submitted responses
Goals 20/20 points
Goals 20/20 points
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Launch and complete FDA Phase 2b treatment drug trial for ADNP syndrome following successful Phase 1/2a.
Goal Type: Focus on core programs to achieve mission and scale back on programs not seen as core.
Goal Two: Launch a patient registry
Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.
Goal Three: Create ADNP assets for open research to add to the patient registry use to expedite research. Assets include animal models, iPSC lines, ADNP characterized neurons, blood bio repository/biobank
Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.
Leadership Development 15/15 points
Leadership Development 15/15 points
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
Our organization has memberships with the Global Gene Foundation Alliance and the National Organization for Rare Disorders. NORD’s program offers leadership seminars, blog posts and events. Additionally, the CEO/President sits on the Combined Brain Board, as well as several other positions where the ADNP Kids Research Foundation collaborates and works together with other rare disease Foundation leaders.
Mobilizing for Mission 15/15 points
Mobilizing for Mission 15/15 points
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
This organization mobilizes for mission in the following ways:
What are this organization’s external mobilizaton efforts?
None, our only external event has been cancelled until it is safe since our children are high risk individuals.
Adaptability Story 30/30 points
Adaptability Story 30/30 points
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
END OF YEAR - Letter From Sandra:
Last year we launched the first ever drug trial for ADNP syndrome, an FDA phase-1/2 drug trial for a repurposed drug that was surprisingly found by the research of parents and fully funded by the support of our ADNP families.
This year we celebrated the completion of that trial with amazing and promising results. As we move forward toward the next phase, we do so with urgency to get a treatment to our children as fast as possible.
Today, our organization is the largest funder of ADNP syndrome research in the world, and we could not do that without the generous support of donors. As a 100% volunteer ran organization, we are fueled by the love of our children and the support of our community.
As we move into 2022, our organization is working harder than ever. We have developed and set an aggressive research agenda, focused on a path to a cure, starting with the first ever possible disease modifying drug for ADNP syndrome.
We have already begun the application process for the next phase of our drug trial with the FDA, and are hopeful to start that trial in the very near future. We have developed and are in the IRB process of the first ever global patient registry and biorepository for ADNP and we have begun the development of ADNP-ASSETS, including numerous IPSC cell lines, animal models and an open biobank.
We held another successful and very fun, "Virtual Warrior Fun Run", with some pretty amazing and creative activities by families and successful partnerships with sponsors.
With a generous $150,000 donation from one single ADNP family, we were able to start a rare disease group drug development project to accelerate the advancement of repurposed drug discoveries using high throughput screenings.
We are deep into planning 2022 with continued urgency and hope to have announcements very soon on a proof of concept study for an ASO therapy and also our biggest research project yet!