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29 CREST LOOP
Staten Island NY 10312-5632
Staten Island NY | IRS ruling year: 2008 | EIN: 26-1316274
TO ADVANCE KNOWLEDEGE THROUGH RESEARCH AND TO EDUCATE THE MEDICAL, ALLIED SCIENCES AND LAY COMMUNITY ABOUT CHIARI MALFORMATION, SYRINGOMYELIA AND RELATED DISORDERS
Ratings are calculated from one or more beacon scores. Currently, we require either an Accountability & Finance beacon or an Impact & Results 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.
We recognize that not all metrics and beacons equally predict a charity’s success. The percentage each beacon contributes to the organization’s overall rating depends on the number of beacons an organization has earned.
Use the tool below to select different beacons to see how the weighting shifts when only one, two, or three beacons are earned.
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Chiari & Syringomyelia Foundation cannot currently be evaluated by our Accountability & Finance methodology because they have e-filed less than three full IRS Form 990s in the past six fiscal years
We recognize that organizations may skip e-filing on certain years, while otherwise meeting our methodology. However, we do not believe it appropriate to rate an organization based on this limited amount of data.
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This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
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
Source: IRS Form 990 (page 7), filing year 2020
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
Activities:
Activity data not reported from the IRS
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)
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability 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 (Chiari & Syringomyelia Foundation) or EIN (261316274) in the 'Search Term' field.
This organization was impacted by COVID-19 in a way that effected their financial health in 2020. This normally would have reduced their star rating. Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them, and doing this pauses our revision of their rating. Charities may submit their own pandemic responses through their nonprofit portal.
Chiari & Syringomyelia Foundation reported being impacted by COVID-19 in the following ways:
Program Delivery
Fundraising Capacity
Revenue
Grants Received
How COVID-19 impacted the organization's operations financially:
As a 501-C3, we depend on public support and were unable to host any of our signature fundraising events in 2020. Typically, our events raise three-quarters of our income which reduced our ability to fund programs and research in 2021. Our organization receives some private foundation funding designated for our international research meetings which have been postponed until 2022. Because we were unable to host the international meetings, we did not receive that funding. Our organization did receive PPP funding and some private major gift funding from individuals. This enabled our organization to end the year with a 20% deficit in revenue compared to 2019.
How COVID-19 impacted the organization's delivery of programs:
COVID-19 impacted our ability to host Regional Educational Programs and local support groups which provide peer support and educational lectures for communities. This program is a lifeline for many isolated individuals diagnosed with rare conditions. We were unable to host our International Hydrodynamics Research meetings that focus on Cerebral Spinal Fluid dynamics. Our Think Tank meeting and Colloquium meeting, which allow physicians and researchers to collaborate were cancelled. The CSF Disorders Symposium at Brown University was cancelled and impacted our ability to provide CME credits to medical professionals. Our awareness program, Unite@Night, was cancelled. This program spreads awareness around the country and empowers patients to engage in a positive activity to help find a cure for their diagnosis.
How this organization adapted to changing conditions caused by COVID-19:
In response to the COVID-19 restrictions, Bobby Jones CSF ran a weekly virtual educational lecture with experts from around the country. This gave patients the opportunity to directly connect with physicians and ask pressing questions. In addition, we implemented a monthly virtual support group for adult patients, parents and young adults (high school - college) to help families get through the isolation and emotionally devastating pandemic. Through weekly virtual meetings, we were able to advance our research efforts with the implementation of the Chiari Clinical Research Network. (CCRN). We have completed protocol for our first randomized surgical trial set to launch July 2021.
Innovations the organization intends to continue permanently after the pandemic:
We tried hosting a virtual fundraising event in October and will resume in-person events in 2021. Utilizing virtual platforms, we focused on our surgical clinical trial initiative and are ready for recruitment. The Common Data Elements project has been submitted to the National Institutes of Health for approval and posting. Through virtual meetings we are working with the American Association of Neurological Surgeons and the Congress of Neurological Surgeons to create guidelines for Chiari surgery through virtual meetings. Our Regional Educational Lecture series will resume in August 2021. We are continuing our virtual Educational Lecture Series and expanding our services to include lectures in international languages to expand our circle of stakeholders.
Not Currently Scored
Chiari & Syringomyelia Foundation cannot currently be evaluated by our Impact & Results 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.
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Chiari & Syringomyelia Foundation reported its largest program on its FY 2020 Form 990 as:
Spent in most recent FY
Percent of program expenses
THIS CONSISTS OF VARIOUS FUNDRAISING EVENTS IN WHICH DONATIONS WERE RAISED FOR FUTURE RESEARCH AND AWARENESS. THESE EVENTS CONSISTED OF EDUCATING ON CHIARI MALFORMATION, SYRINGOMYELIA AND RELATED DISO ... (More)
THIS CONSISTS OF VARIOUS FUNDRAISING EVENTS IN WHICH DONATIONS WERE RAISED FOR FUTURE RESEARCH AND AWARENESS. THESE EVENTS CONSISTED OF EDUCATING ON CHIARI MALFORMATION, SYRINGOMYELIA AND RELATED DISORDERS THROUGH DVD'S AND VARIOUS SPEAKERS. (Less)
Chiari & Syringomyelia Foundation has earned a 100% for the Culture & Community beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
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Full Credit
Partial Credit
No Credit
Not ApplicableConstituent Feedback - Data Available - 100/100 ptsConstituent Feedback - Data Available - 100/100 pts
100% of beacon score
This organization reported that it is collecting feedback from the constituents and/or communities it serves. Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective.
Who are the people you serve with your mission? Describe briefly.
Bobby Jones Chiari & Syringomyelia Foundation serves patients, caretakers, medical professionals, and researchers who are affected by or interested in Chiari malformation, syringomyelia and related disorders.
How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees
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 strengthen relationships with the people we serve
With whom does your organization share the feedback you got from the people you serve?
The people we serve, Our staff, Our board, Our funders
How has asking for feedback from the people you serve changed your relationship with them or shifted power - over decisions, resources, rules or in other ways - to them?
Asking for feedback is always good. Constructive criticism or praise from our constituents helps the staff plan and execute research/programs/events that better serve our stakeholders. We serve the patients, their families, and their physicians. As a 501-C3 Charity, the ultimate power, decisions, and resources are provided by people we serve.
What challenges does your organization face in collecting feedback from the people you serve?
It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome
Briefly describe a recent change that your organization made in response to feedback from the people you serve.
After receiving feedback from the Hispanic population that they would like materials and lectures in Spanish, we initiated a "Ask the Expert " lectures series and basic materials in Spanish. In addition, we identified medical centers fluent in Spanish that have staff to better answer questions for this population.
Equity Practices - No Data Available - UnscoredEquity Practices - No Data Available - Unscored
This organization has not provided information regarding the Equity Practices it is presently implementing. As such, the organization has not earned a score on this metric. Charity Navigator believes nonprofit organizations implementing effective equity policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.
Chiari & Syringomyelia Foundation has earned a 100% for the Leadership & Adaptability beacon. See the metrics below for more information.
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.
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Full CreditPartial CreditNo CreditNot ApplicableMission - 10/10 ptsMission - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
RESEARCH, EDUCATION AND AWARENESS OF CHIARI MALFORMATION, SYRINGOMYELIA, AND RELATED DISORDERS
Vision - 10/10 ptsVision - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
Within a decade, we will be the pre-eminent world-wide resource for professional and lay people seeking accurate and current information about treatments for and best practices surrounding the management of Chiari malformation, syringomyelia and related disorders. With our unique resources, both financial and intellectual, we will be the leader in driving ongoing programs and research focused on earlier diagnosis and better outcomes for people suffering with these disorders.
Source: Nonprofit submitted responses
Goals - 20/20 ptsGoals - 20/20 pts
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Form working relationships with pre-eminent national & international medical organizations to influence the direction of research, inclusive of the patient voice.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Two: Expand the members of our Chiari Clinical Research Network (CCRN) to include global neurosurgical partners to design surgical clinical trials for better treatment options & Improved outcomes.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Three: There is a growing need for educational materials in various languages. We are expanding our lectures to include global experts using their first language to service patients worldwide.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Leadership Development - 15/15 ptsLeadership Development - 15/15 pts
The nonprofit provides evidence of investment in leadership development
*Staff members Congress of Neurological Surgeons meeting in San Francisco to participate on Chiari Guidelines committee and attend educational seminars. *Staff members were trained and certified in NIH Human Subjects Research for Clinical Trial projects. *Staff research members were trained in REDCap database development to act as Data manager for clinical trials
Mobilizing for Mission - 15/15 ptsMobilizing for Mission - 15/15 pts
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
*We are a member of The EDS Research Consortium a group of non-profits working together for the benefit of patients *We are on the steering committee of Interreg REVERT Project with the University of Cambridge *We are the patient advocacy group for the Park Reeves PCORI study PFD vs PFDD. *We host The Unite@The Hill Conference in DC for non-profits to advocate for federal research funding *Unite@Night walks across the country raise awareness *Our website, Facebook page, Twitter, Instagram, Youtube, Vimeo and Linked In all promote our mission & Activities *We participate annually in the NINDS Non-Profit Forum to share ideas and goals *We host the International Hydrodynamics Symposium bringing researchers from around the globe together to share ideas *We published our Chiari 1 Malformation CDE Recommendations in "Neurosurgery" *We are on the AANS/CNS Chiari Guidelines Committee
Adaptability Story - 30/30 ptsAdaptability Story - 30/30 pts
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
During the pandemic, our organization pivoted to a virtual world. Programs, meetings, research and education were all executed on a virtual screen. The lack of funding from fundraising events was balanced by the reduction in expense with our inability to travel and host in person programs. This past year, we increased the number of our educational lectures and support groups to help diagnosed patients and their caregivers come back to in-person events for education, support and to help raise funds for research. The pandemic caused our organization to rethink the best way to execute our mission. What we realize, is that we should continue to utilize our virtual tools to reach some of our stakeholders. We returned to in person events by mid-year 2022. Lectures and meetings are blended, but there is nothing to replace direct human interaction. We will also continue to host virtual lectures and support groups to include patients that are homebound or unable to attend meetings. Additionally, we continue to learn how to more efficiently manage the tools and resources that we already utilized.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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