Bobby Jones Chiari & Syringomyelia Foundation

Built on Leadership, Vision & Commitment to Find a Cure

aka Chiari & Syringomyelia Foundation   |   Staten Island, NY   |  http://bobbyjonescsf.org

Mission

To advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related disorders.

Notes from the nonprofit

Our (e)Door is Always Open! Contact us at [email protected] to learn more about what we do, how we do it and how you can get involved today!

Ruling year info

2008

Executive Director

Ms. Dorothy J. Poppe

Main address

29 Crest Loop

Staten Island, NY 10312 USA

Show more contact info

Formerly known as

CSF

EIN

26-1316274

NTEE code info

Alliance/Advocacy Organizations (E01)

Alliance/Advocacy Organizations (G01)

Neurology, Neuroscience (G96)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Millions of patients and their families are devastated everyday and struggle with the effects of Chiari malformation, syringomyelia and related disorders. Education in the patient community, amongst medical professionals and within the general public is critically required. Additionally, so little is actually understood about these conditions, that ongoing and robust research is needed more than ever to develop better diagnostic methods, improve medical treatment and improve the quality-of-life for these patients and their loved ones. Bobby Jones CSF funds education, research and awareness to give a voice to children and adults directly and indirectly affected by these disorders.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

CSF Physician Lecture Series & Support Meetings

CSF is dedicated to providing patients and families in the United States and abroad with accurate, trustworthy and helpful medical information about Chiari malformation, syringomyelia and the many related disorders and co-morbidities that families struggle with on a daily basis. Periodic meetings are held around the U.S. in various cities to develop local support systems while providing critical educational material and outreach to families and patients that need it. Every lecture sponsored by CSF is filmed and later posted on the CSF website/YouTube to maximize the number of people affected. This has ensured that important medical information about these conditions was provided to 3 Million people around the world--- and that number is growing exponentially each year.

Population(s) Served
Adults
People with diseases and illnesses

CSF awards small grants for young investigators and for new, innovative research publications to inspire new breakthroughs in the understanding and treatment of Chiari malformation, syringomyelia and related disorders.

Purpose: The Chiari & Syringomyelia Foundation Bobby Jones CSF /CNS Pediatric Fellowship grant is meant to encourage young professionals in the early stages of their career in the clinical investigation or basic science research of Chiari malformations, syringomyelia and related cerebrospinal fluid disorders. It is our hope that this small award will lead to the development of a career-long interest in the etiology and treatment of Chiari malformations, syringomyelia and related cerebrospinal fluid disorders.

This grant will be awarded at the Joint Sections Pediatric meeting.

Population(s) Served
Adults
Academics

The number of investigators conducting numerical and experimental simulations to better understand the dynamics of cerebrospinal fluid (CSF) has continued to increase since the 1st International CSF Dynamics Symposium held in Zurich, Switzerland, 2nd in Manhasset, NY, 3rd in Amiens, France, 4th in Atlanta, Georgia and 5th in Oslo, Norway. Building on this momentum, we are planning our 6th International CSF Dynamics Symposium in 2021 in Gainesville, Florida to continue exchange of ideas toward modeling of CSF.

Approximately 30 invited speakers from around the world presented their research that involves either experiments or computational methods to better understand normal physiology and diseases related to CSF motion, such as Chiari malformation, syringomyelia and hydrocephalus.

All presentations were video recorded and will be posted, with free access, on this website in order to maximize exposure of the symposium research idea transfer

Population(s) Served
People with disabilities
Adults

The annual CSF Research Colloquium is a conference where thought leaders in the fields of Chiari, syringomyelia and related disorders come together to present new, exciting research and share their work to inspire new investigators and research projects. It is the hope that this sharing of information will spark breakthroughs in Chiari, syringomyelia and related disorder research. Each year, the focus of the Colloquium shifts, based on the research being accomplished throughout the year. The past CSF Colloquia topics are: Ehlers-Danlos syndrome, craniocervical instability, co-morbidities of Chiari, pathophysiology of Chiari & syringomyelia, and cognitive effects of CSF disorders.

Population(s) Served
Adults
People with diseases and illnesses

After completing the Common Data Elements for CHiari malformation, CSF saw a need to develop an international patient registry that collects integral information on the diagnosis, treatment and natural history of Chiari malformation, syringomyelia and related disorders. While these disorders are not always considered "rare", it is very difficult to gather the large, complete and accurate data necessary for researchers to make real, medical conclusions about best diagnosis and treatment methods. A large-scale, international scope for a patient registry will provide the large amount of data necessary AND help patients around the world receive better care-- not just patients in America. This project will be ongoing, so no "set" budget exists. This project involves CSF-partnered doctors, researchers and bodies of influence like the National Institutes of Health.

Population(s) Served
People with diseases and illnesses
People with physical disabilities

It is central to CSF's mission to not only educate patients and their families, but also the medical and allied health professionals who will one day treat them. To help better educate physicians, nurses and the like, CSF has developed the Consider Chiari campaign to better inform these caregivers about best practices in diagnosis and care, improved treatment methods, and emerging research in the field that will advance their clinical practice. Many of these seminars offer Continuing Medical Education (CME) credits to these professionals, providing a service to them as well as the patients who will ultimately benefit from improved care!

Population(s) Served
Adults
People with diseases and illnesses

CSF brought together 73 doctors, industry partners and scientific researchers who work in the Chiari I malformation field on a day-to-day basis from over 15 countries around the world to bring their patients' perspectives into the first iteration of the Common Data Elements (CDEs) for Chiari I malformation. This project was completed alongside the National Institutes of Health and the National Institute of Neurological Disorders & Stroke (NIH and NINDS). The current version of the Chiari I CDEs are housed in the National Library of Medicine. These CDEs will be updated, annually, as more information is constantly learned about this currently poorly understood disorder and the many related disorders and co-morbidities that affected millions in the U.S., alone.
This is an ongoing project and a team from our medical board continues to work with the NIH/NINDS.

Population(s) Served
Adults

CSF sets aside at least $15,000 per year to support advocacy and awareness materials and programs, including in-person and remote advocacy events, awareness walks and events and more.

Population(s) Served
Adults
People with diseases and illnesses

Problem:
There is wide variety in the surgical and medical management of Chiari I malformation/syringomyelia (CMI/SM) across the United States. There is also no agreement or consensus on clinical guidelines for the diagnosis, treatment and, frankly, prognosis for these conditions.

Pilot Study Proposal:
The study will include (initially) 6-10 site PIs at major medical/academic institutions. PIs will enroll a minimum of 20 consecutive surgical candidates who will then be enrolled into the prospective study. Currently, PIs at the following major medical institutions have already signed on to be a part of this study:
Washington University at St. Louis (data will be housed here, but managed by PAO) | St. Louis, MO
University of Utah | Salt Lake City, UT
University of Michigan | Ann Arbor, MI
Johns Hopkins University | Baltimore, MD
Children's Hospital of Colorado | Aurora, CO
Weill Cornell Medical College | New York, NY
Children's of Alabama | Birmingham, AL

Aims of Study:
1. Develop a prospective, multicenter registry of surgical Chiari I malformation/syringomyelia (CMI/SM) patients (adult and pediatric). There are currently no prospective registries that include adult and pediatric patients at major medical institutions. This represents a major gap in the current capabilities of research in this field because pediatric and adult CMI/SM are, clinically, very different in the ways they are diagnosed and treated. This leads to a wide variety of clinical practices and confusing, incomplete prognoses.

2. Develop a Chiari Surgical Success Scale (CSSS) from the pre-surgical variables in Aim 1 that will be able topredict the probability of surgical success in symptomatic and asymptomatic CMI/SM patients (adult and pediatric) who have undergone surgery. These data will be analyzed and a score will be developed by yet another third-party epidemiologist (who will have been involved in protocol development and data quality assurance).


What is Novel About this Proposal:
1. Radiographic measurements and clinical signs and symptoms will be collected by the enrolling PI (neurosurgeon) and submitted to the dataset (managed by the PAO). All outcomes research (pre- and post-operatively) will be reported directly by the patient (and/or caregiver of patient) directly to the third-party PAO. Arguably, this is a novel form of blinding. The proposed methodology will simultaneously integrate the valuable patient-reported data, while also guaranteeing scientific rigor of clinical measurements and clinician-reported data.

2. The PAO will be collecting all patient-reported data, pre- and post-surgical intervention. The goals of this approach being:
Minimize bias in outcomes reporting (clinicians will not report PCOR on behalf of patients, and patients will not feel obliged to respond a certain way if they thought their clinician would be seeing their responses)
Create an entirely novel, patient-centered methodology for collecting outcomes data across multiple centers

Population(s) Served
People with diseases and illnesses
People with disabilities

Where we work

Awards

Affiliations & memberships

Better Business Bureau Wise Giving Alliance - Organization

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of clients participating in educational programs

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, People with diseases and illnesses

Related Program

CSF Physician Lecture Series & Support Meetings

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of people who have PHYSICALLY attended a CSF Educational Lecture Series meeting. This does NOT include individuals who access materials online.

Number of people who have accessed online educational videos

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

CSF Physician Lecture Series & Support Meetings

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Educational lecture videos are freely available online to be accessed by individuals affected by Chiari, syringomyelia and related disorders around the globe

Number of free educational videos available on our website

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

CSF Physician Lecture Series & Support Meetings

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Total number of educational lectures and presentations given by medical professionals that are freely available as videos on the CSF website.

Number of free registrants to classes

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, Families, Parents

Related Program

CSF Physician Lecture Series & Support Meetings

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our educational lecture series has expanded to our 12 regions of the US & 1 in the UK. We would like to maintain our ability to bring local peer support & educate millions with our online video posts.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF) is poised to achieve lofty goals and has established quality standards to achieve them.

Mission: To advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders.

Vision: Within a generation, 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 CM and SM. 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.

Values:
· Honesty and Integrity is uppermost in everything we do.
· Commitment to quality is central to all activities.
· We strive to exceed the expectations of patients and physicians.
· Our volunteers are a respected source of knowledge and experience.
· Social Responsibility
· Fiscal responsibility
· Advocacy for the patient

1. Raise a $5 Million dollar research endowment to provide (and continue to fund) significant long term research.
2. Create and fund ever-growing educational programs for lay community, medical and allied sciences.
3. Develop and lead a global clinical research network to inspire data sharing and international cooperation which will benefit individuals affected by Chiari malformation, syringomyelia and related disorders.

With a small staff of only 4 people, CSF has generated over $6 Mllion in funds for education and research. The organization has worked on large-scale multi-national research and education projects with highly-respected institutions such as Johns Hopkins University, Brown University, and the National Institutes of Health. CSF has provided more than 300 educational lectures in-person and online to over 1.6 Million people around the world. Six CSF-funded research projects have been completed and several have already been published in notable scientific journals. The organization has garnered support from thousands of people in the U.S. and abroad.... All in just under 10 years.

Since its inception in October 2007, the boards and staff of CSF each have a role and responsibility to ensure all goals are met. Strengths of the CSF boards and staff are:
1. Personal commitment to the CSF mission & passion about the issue(s)
2. Focused, easily built consensus and congruence of thinking; like-mindedness
3. Experienced, high quality people that exhibit professionalism in leadership of the organization and think of it as a 'business'
4. Working relationships, confidence and trust within and across the various boards
5. Financially strong with significant fund raising potential

How the roles between the Boards work:

Research: The Board of Directors directs funding for research on an annual basis. The SEA Board puts out RFPs and reviews grants. The SEA Board recommends to the Board of Directors which grants should be funded. The Board votes and funds research projects, research symposiums, and research colloquiums to ensure that there is collaboration between the clinical and scientific communities. The Board of Trustees is working on growing the Marcy Carlson Speer Five Million Dollar Research Endowment

Education: CSF in the process of establishing twelve regional chapters to:
1. Educate through medical lectures and our "Consider Chiari" Campaign
2. Support individuals in a community setting
CSF currently has Eight Regional Chapters established. Staff members facilitate the planning and execution of the lectures with a physician or member of the SEA Board. These lectures are taped and uploaded to the website as a free educational resource for everyone.

Awareness: CSF increases awareness about Chiari malformation, syringomyelia and related disorders through programs and events.

Through these events, CSF cultivates relationships with local, national companies, and individuals to continue to expand our resources, capacities and connections to support our progress.

1. Commitment to Charity Accountability Standards:
- Guidestar Platinum Seal: Certified
- Better Business Bureau Wise Giving Alliance Seal: Certified
- Health on the Net Code: Certified
2. International Patient Registry - Set up & accepting participants
3. Funded millions in research projects and meetings since 2011.
4. Education: 522 educational lectures have been presented and posted online to benefit patients and families.
5. Awareness:
a. [email protected] - Annual Established Event(s)
There have been more than 450 awareness walks around the country since 2012. Walks have raised upwards of $500,000 for research and education and have taught more than 5,000 people about these disorders in that same amount of time!
*always adding new walks in grass-roots fashion, touching all cities-- large or small
b. Bobby Jones Classic for CSF - Annual Established Event
*continue to grow awareness in golf community
c. NY Charity Ball - Annual Established Event
*will expand local interest
d. Night of Light Children's Gala - Annual Established Event
e. Dinner Dance for a Cure - Annual Established Event
*will expand local support
e. NYC 4 CSF Party - New! Established Event
Raised over $150,000 in its first year, alone.
*will continue to grow interest/support in NYC and spread awareness through the community
f. Common Data Elements Project - Completed and staffed for ongoing changes.
g. Development of the Chiari Clinical Research Network (CCRN)
f. Patient Partner on the PCORI 2.8 Million Grant for PFD vs PFDD
g. Launching Pilot Study for Chiari Surgical Severity Score (CSSS)
h. Participant in the Congress of Neurological Surgeons Guidelines for Chiari Committee

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    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,

  • What significant change resulted from feedback?

    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.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders,

  • How has asking for feedback from the people you serve changed your relationship?

    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.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    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,

Financials

Bobby Jones Chiari & Syringomyelia Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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Bobby Jones Chiari & Syringomyelia Foundation

Board of directors
as of 6/21/2021
SOURCE: Self-reported by organization
Board co-chair

Mr. Paul Farrell

Farrell Law Firm, LLC

Term: 2007 -


Board co-chair

Mr. James Rains

Georgia Tech Univeristy

Term: 2019 -

Lory Watson

No Affiliation

Paul Farrell

Farrell Law Firm

Cameron Dawson

Skydog Productions

Marina White

Cheribundi

Pamela Fenner

No Affiliation

James Rains

Georgia Tech University

Catherine Loughin, DVM

Long Island Veterinary Specialists

Robert Jones IV, M.Div, Psy.D.

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 2/22/2021,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data