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!
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
Majority Independent Board Members - 100% independent members
10 out of 10 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. We check to see that a majority of board members are identified as independent on their tax form.
Source: IRS Form 990
Independent Board Size - 3 independent members
10 out of 10 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. For most organizations, we check to see if the organization has at least three independent board members. For large, donor-funded organizations, we check to see if the organization has at least five independent board members
Source: IRS Form 990
Material Diversion of Assets - None
10 out of 10 points
A diversion of assets — any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft — also can seriously call into question a charity's financial integrity. We review the charity's most recent IRS Form 990 to see if the charity has reported any diversion of assets.
Source: IRS Form 990
Tax Form Disclosures and Policies
Full Credit
Partial Credit
No Credit
Website Listed on Tax Form - Listed
3 out of 3 points
Charity Navigator looks for a website on the IRS Form 990 as an accountability and transparency metric.
Nonprofits act in the public trust and reporting publicly on activities is an important component.
Source: IRS Form 990
Conflict of Interest Policy - Listed
7 out of 7 points
Charity Navigator looks for the existence of a conflict of interest policy on the IRS Form 990 as an accountability and transparency measure.
This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.
Source: IRS Form 990
Whistleblower Policy - Missing
0 out of 7 points
Charity Navigator looks for the existence of a whistleblower policy per the IRS Form 990 as an accountability and transparency measure.
This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.
Source: IRS Form 990
Document Retention and Destruction - Missing
0 out of 7 points
Charity Navigator looks for the existence of a document retention and destruction policy per the IRS Form 990 as an accountability and transparency measure.
This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.
Source: IRS Form 990
Documents Board Meeting Minutes - Yes
3 out of 3 points
Charity Navigator looks to confirm on the IRS Form 990 that the organization has this process in place as an accountability and transparency measure.
An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.
Source: IRS Form 990
Website Disclosures
Full Credit
Partial Credit
No Credit
Tax Form Posted on Nonprofit's Website as stated on Form 990 - Missing
0 out of 3 points
For almost all charities, we check the charity's IRS Form 990 to see if it discloses that the Form 990 is available on the charity's website. As with the audited financial statement, donors need easy access to this financial report to help determine if the organization is managing its financial resources well.
Source: IRS Form 990
Financial Metrics
Full Credit
Partial Credit
No Credit
Liabilities to Assets: Ratio - 0.00%
15 out of 15 points
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent IRS Form 990). This ratio is an indicator of an organization's solvency and/or long-term sustainability.
Source: IRS Form 990
Program Expense: Ratio - 78.92%
25 out of 25 points
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three IRS Forms 990). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.
Source: IRS Form 990
Additional Information
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
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
Dylan Verden, Chief Science Officer
$65,744
Dominique Lessard, Chief Science Officer
$41,727
Michelle Tao, Director Of Strategy
$0
Luke Rosen, Board Chair
$0
Sally Jackson, Director
$0
Source: IRS Form 990 (page 7), filing year 2023
IRS Published Data (Business Master File) - Data Available
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
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 (Kif1aorg Inc.) or EIN (820714729) in the 'Search Term' field.
Impact & Measurement
Not Currently Scored
Kif1aorg Inc. 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.
Does your organization collect feedback (i.e., perceptions, opinions, concerns) from the people meant to ultimately benefit from your mission?
Yes
Feedback Usage
100 out of 100 points
How is your organization using feedback from the people you serve?
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 across demographic groups
To strengthen relationships with the people we serve
To understand client needs and how we can help them achieve their desired outcomes
Practices
100 out of 100 points
Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually
We take steps to get feedback from marginalized or under-represented people
We aim to collect feedback from as many people we serve as possible
We take steps to ensure people feel comfortable being honest with us
We engage the people who provide feedback in looking for ways we can improve in response
We tell the people who gave us feedback how we acted on their feedback
We share the feedback we received with the people we serve
Challenges
100 out of 100 points
What challenges does your organization face in collecting feedback from the people you serve?
We don't have any major challenges to collecting feedback
Equity Strategies™
77 out of 100 points
67% of Culture & Community score
Full Credit
Partial Credit
No Credit
Equity Strategies™ - Number of Data, Policies & Processes
77 out of 100 points
This organization's score of 77 is a passing score. The organization reported that it is implementing 3 Equity Practices.
The Equity Strategies™ checklist, developed by Equity in the Center™, consists of data, policies & processess that promote racial equity in operations and programs. The Equity Strategies™ were developed by Equity In The Center®, and collected in partnership with Candid.
Equity Data (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 & Processes (2/7)
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.
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.
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission.
A global community dedicated to improving the lives of those affected by KAND and accelerating research to find a cure
Vision Statement
The nonprofit organization presents evidence of strategic thinking through articulating the organization's vision.
Our goal is clear: to immediately find treatment for every individual living with KIF1A Associated Neurological Disorder. We dream of a world with an easily accessible cure for our kids with KAND.
Strategic Goals
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Engage a diverse group of stakeholders in our Research Network, including clinicians, to meeting regularly and discuss scientific discoveries and translational research for KAND.
Goal Two: Connecting families with each other and creating an active community that supports one another and organizational initiatives.
Goal Three: Advocate and support patient centered research. KIF1A.ORG is the only organization driving multiple initiatives to treat and cure KAND.
Leadership
30 out of 30 points
Full Credit
Partial Credit
No Credit
Investment in Leadership Development
The nonprofit provides evidence of investment in leadership development.
Supporting staff and volunteers financially to attend in-person or virtual conferences relevant to our community and organization. Also engaging with the Rare As One Network with CZI and utilizing their resources and knowledge to help our staff and volunteers be successful in their work.
External Focus on Mobilizing Mission
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Collaborative Engagement
Thought Leadership
Social Promotion
Civic Engagement
Public Policy Advocacy
Adaptability
30 out of 30 points
Full Credit
Partial Credit
No Credit
Adaptability Statement
30 out of 30 points
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
Over the past 12-18 months our organization has seen tremendous growth. We grew our organizational capacity with the help of fundraising and a capacity building grant from CZI (Chan Zuckerberg Initiative). The research network has grown in this time from 40 members to over 160 engaged researchers, scientists, and clinicians. Our community continues to grow as well. Previously we knew of 300 patients world wide with KAND and now our data base has 600 documented patients. We have also raised a lot of money to help fund research studies and initiatives driven by our leadership.