Health—General & Rehabilitative

Chiari & Syringomyelia Foundation

  • Staten Island, NY
  • CSFINFO.ORG

Mission Statement

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

 

The Chiari & Syringomyelia Foundation, Inc. is a national a 501(c)(3) organization committed to disseminating accurate and current information about treatments for and best practices surrounding the management of Chiari malformation (CM), syringomyelia (SM) and related CSF (cerebrospinal fluid) disorders.

 

Many recognized world-class physicians, scientists and professionals agreed to collaborate and form a superior Scientific Education & Advisory Board (SEAB). The trusted and dedicated members of our Board of Directors and Board of Trustees include community and business leaders, educators, legal experts, families, and patients, who have been advocates in the CM/SM community for years. They have the skills and passion to create, fund, and direct programs and research that will change the lives of the 300,000 families affected by CM/SM.

Main Programs

  1. Autism Pilot Study
  2. CSF Regional Education Lectures and Awareness Programs
  3. Bobby Jones Fellowship
  4. CSF Small Grant Award for Trainees
  5. Washington DC Chapter Development
  6. CSF Hydrodynamic Symposium
  7. CSF Research Colloquium
  8. International Patient Registry
Service Areas

Self-reported

International

CSF serves families affected by Chiari malformation and syringomyelia and related disorders across the United States and internationally.

ruling year

2008

Principal Officer since 2007

Self-reported

Dorothy Poppe

Keywords

Self-reported

Chiari , CM, syringomyelia, SM, tethered cord, paralysis, pain, spinal, spine, brain, nervous system, intracranial hypertension, ehlors danlos, hydrocephalus,

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Also Known As

CSF, Inc.

EIN

26-1316274

 Number

7746768493

Contact

Cause Area (NTEE Code)

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.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

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.

Programs

Self-reported by organization

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

Program 1

Autism Pilot Study

The  Chiari Syringomyelia Foundation Project to analyze the prevalence of undiagnosed
Chiari Malformation and Related Neurological Disorders within a subpopulation
of children diagnosed with high functioning autism.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

General Public/Unspecified

Budget

$10,000.00

Program 2

CSF Regional Education Lectures and Awareness Programs

The CSF Education and Awareness Program was designed to spread awareness and educate individuals about Chiari malformation, syringomyelia and related disorders.  Through this program, CSF is holding quarterly educational lectures and support group meetings nationally with the help and support of the local CSF Chapter.

Category

General/Unspecified

Population(s) Served

General Public/Unspecified

None

None

Budget

$24,000.00

Program 3

Bobby Jones Fellowship

CSF Small Grant Award for Established Investigators Award Amount

$25,000

Purpose

The Chiari & Syringomyelia Foundation Small Grant Award is meant to assist clinicians and scientists in the clinical investigation or basic science research of Chiari malformations, syringomyelia and related cerebrospinal fluid disorders.

Eligibility

The award is open to all medical and scientific professionals with advanced degrees (e.g. M.D. and/or Ph.D.) who are at the Associate or Full Professor stage of their career. The awardee must use the award to investigate a targeted hypothesis concerning the mechanisms and/or treatment of Chiari malformations, syringomyelia and related cerebrospinal fluid disorders. The term of the award will be 12 months and the awardee will be expected to present their research at the annual CSF Scientific, Educational and Advisory Board meeting which meets in conjunction with the American Association of Neurological Surgeons annual meetings. Further, any publications or presentations associated with research supported under this small grant award must acknowledge financial support from CSF.

Eligible Expenses

Budget support of up to $25,000** is available. Detailed budget justification is required for the application and may include salary support up to $5,000. The remaining budget must be applied towards equipment and supplies needed to conduct the research. A final account of expenses incurred following completion of the small grant is required.  In addition, CSF will extend a stipend, so the award winner will be able to attend the annual CSF "Think Tank" meeting to present their findings.

**An additional $25,000 will be allocated to the Marcy Carlson Speer Research Endowment Fund

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

General Public/Unspecified

Budget

$50,000.00

Program 4

CSF Small Grant Award for Trainees

CSF Small Grant Award for Trainees

Award Amount$10,000 (five awards will be given out for a total of $50,000)

PurposeThe Chiari & Syringomyelia Foundation Small Grant Trainee Award is meant to assist clinicians and scientists 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 these small projects will lead to the development of a career-long interest in the etiology and treatment of Chiari malformations, syringomyelia and related cerebrospinal fluid disorders.

EligibilityThe award is open to all medical and scientific professionals with advanced degrees (e.g. M.D. and/or Ph.D.) who are within two years of their post-graduate training. The awardee must use the award to investigate a targeted hypothesis concerning the mechanisms and/or treatment of Chiari malformations, syringomyelia and related cerebrospinal fluid disorders. The term of the award will be 12 months and the awardee will be expected to present their research at the annual CSF "Think Tank" meeting which meets in conjunction with the American Association of Neurological Surgeons annual meetings. Further, any publications or presentations associated with research supported under this small grant award must acknowledge financial support from CSF.

Eligible ExpensesBudget support of up to $10,000 is available. Detailed budget justification is required for the application and may include salary support up to $5,000. The remaining budget must be applied towards equipment and supplies needed to conduct the research. A final account of expenses incurred following completion of the small grant is required.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

General Public/Unspecified

Budget

$50,000.00

Program 5

Washington DC Chapter Development

Establishment of an educational office in the Washington, DC Metro area.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

General Public/Unspecified

Budget

$25,000.00

Program 6

CSF Hydrodynamic Symposium

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. Building on this momentum, we held the 2nd International CSF Dynamics Symposium to continue exchange of ideas toward modeling of CSF.

Approximately 25 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

Category

General/Unspecified

Population(s) Served

Children and Youth (infants - 19 years.)

Adults

Physically Disabled nec

Budget

$30,000.00

Program 7

CSF Research Colloquium

CSF sponsored the Ehlers-Danlos Syndrom Colloquium which was held on October 1-2, 2011 at the Cosmos Club in Washington DC. Click the link above for the event program. Videos of the Colloqium talks can be viewed by clicking the topics below.

The views and opinions expressed by the participants in this Colloqium are their own, based upon their individual specific experiences or their general observations reacting to hypothetical circumstances. The views expressed and the statements made by participating physicians do not represent specific medical advice nor do they represent any official policy or position taken by CSF.

Category

General/Unspecified

Population(s) Served

None

None

None

Budget

$25,000.00

Program 8

International Patient Registry

The NIH, NINDS and National Library of Medicine are assisting
CSF with the creation of an international patient registry. With this
database in place, physicians and scientists from around the globe will
be able to better study the causes, diagnoses, treatments and outcomes
of Chiari malformation, syringomyelia and related disorders to find
answers for those affected.

Category

General/Unspecified

Population(s) Served

Adults

Children and Youth (infants - 19 years.)

None

Budget

Results

Self-reported by organization

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

1. Number of clients participating in educational programs

Target Population
General/Unspecified

Connected to a Program?
CSF Regional Education Lectures and Awareness Programs
TOTALS BY YEAR
Context notes for this metric
CSF held 10 educational lectures in 2015 with an average of 25 people attending. In addition, these lectures are videotaped and over 1/2 million people have accessed these videos.

2. Number of conference attendees

Target Population
General/Unspecified

Connected to a Program?
Washington DC Chapter Development
TOTALS BY YEAR
Context notes for this metric
The Washington DC Chapter development continues to grow each year. In 2014, 3 lectures were held with approximately 25 participants. In 2015, 4 lectures were held with an average of 30 people attend

Charting Impact

Self-reported by organization

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

  1. What is the organization aiming to accomplish?
    The Chiari & Syringomyelia Foundation(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
  2. What are the organization's key strategies for making this happen?
    1. Raise a Five Million Dollar Research Endowment to fund significant long term research.
    2. Create and fund Educational Programs for lay community, medical and allied sciences.
    3. Generate national and international awareness through events and programs
  3. What are the organization's capabilities for doing this?
    Since its inception in October 2007, the Board and staff of the Chiari & Syringomyelia Foundation (CSF) has been focused on addressing the challenging issues of a new not-for-profit (NFP) organization. The Board has established two other leadership groups that are deeply engaged in CSF's initiatives, namely the Scientific, Education & Advisory Board (SEA Board) and the Board of Trustees. Each Board has a role and responsibility to ensure our goals are met. The strengths of these Boards and staff nclude:

    1. Personal Commitment to the CSF mission and passionate 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 an RFP 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.

    With a small staff of four people, CSF generates income and awareness through events and campaigns:
    1. Charity Ball - Staten Island, New York
    2. Unite@Night - National Walks
    3. Crush Chiari - National Campaign
    4. Dinner Dance for A Cure - Twinsburg, Ohio
    5. Night of Light Children's Gala - Washington DC & New York City
    6. Bobby Jones Classic for CSF - Atlanta, GA
    7. Taste for A Cure - Barrington Hills, IL

    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.
  4. How will they know if they are making progress?
    1. CSF hosts an annual Think Tank meeting to review short term goals on a yearly basis and establish long term goals for the
    organization. At this meeting, the staff, Board of Directors, Board of Trustees and Scientific, Education and Advisory Board meet to
    conduct an overall review of financials, programs, events and research grants.


    2. In addition, an annual budget with targets is presented to the Board of Directors. Targets are reviewed after each event to
    determine if goals were met.

    3. Staff sets goals on an individual basis. These goals are reviewed by ED and Board annually to determine if goals are on track or
    should be modified.

    4. Boards participate in a Strategic Planning Process every five years to review progress and determine new strategies to obtain
    goals.
  5. What have and haven't they accomplished so far?
    1. Our commitment to Charity Accountability Standards:
    Guidestar Seal - Accomplished
    Better Business Bureau Seal- Accomplished
    Health on the Net Code- In progress
    2. National Patient Registry - In progress
    3. Research Funding: Over $250,000 (National & International)
    Funded 10 Research Meetings
    Funded 5 Grants
    4. Educational: Eight out of Twelve Regional Educational Chapters established
    73 Educational Lecture Videos Uploaded
    5. Awareness: Unite@Night - 41 walks out of long term goal of 85 walks
    Accomplished $100,000 with long term goal to raise $250,000 from walks
    Accomplished 2000 walkers with long term goal of 5000 walkers
    Bobby Jones Classic for CSF - Established but need to expand into the world of golf.
    Charity Ball - Established - Need to expand the local interest
    Night of Light Children's Gala -Established - Focus on the Research Endowment
    Dinner Dance for a Cure - Established - Need to expand the local support
    Crush Chiari Campaign - A New Campaign - Awareness and allows children to participate in fundraising experience.
Service Areas

Self-reported

International

CSF serves families affected by Chiari malformation and syringomyelia and related disorders across the United States and internationally.

Funding Needs

CSF would like to establish the Marcy Carlson Speer Research Endowment Fund of $5 Million Dollars to provide sustainable funding for superior clinical and/or scientific projects.

photos




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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

CHIARI & SYRINGOMYELIA FOUNDATION
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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Operations

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

Chiari & Syringomyelia Foundation

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2015 and 2014
  • Board Chair, Board Co-Chair and Board Members
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Principal Officer

Dorothy Poppe

Governance

BOARD CHAIR

Paul J. Farrell

No Affiliation

Term: Oct 2007 -

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

Yes

BOARD ORIENTATION & 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 & 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?