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Chiari & Syringomyelia Foundation

AKA  CSF, Inc.
Staten Island, NY
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GuideStar Summary

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit and Charting Impact Report are available
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Basic Organization Information

Chiari & Syringomyelia Foundation
Also Known As: CSF, Inc.
Physical Address: Staten Island, NY 10312 
EIN: 26-1316274
Web URL: www.CSFinfo.org 
NTEE Category: E Health—General & Rehabilitative
E01 Alliance/Advocacy Organizations
G Disease, Disorders, Medical Disciplines
G01 Alliance/Advocacy Organizations
G Disease, Disorders, Medical Disciplines
G96 Neurology, Neuroscience
Ruling Year: 2008 


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Mission Statement

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.   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.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses (GuideStar Exchange,
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April 2014)

Fiscal Year Starting:
Fiscal Year Ending:

Total Revenue $738,251
Total Expenses $388,384

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April 2014)

Fiscal Year Starting:
Fiscal Year Ending:

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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April 2014)

Dorothy Poppe

Term:

Since Dec 2007

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April 2014)

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Board of Directors (GuideStar Exchange,
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April 2014)

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Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in April 2014

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Programs

Program: Autism Pilot Study (GuideStar Exchange,
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April 2014)

Budget:
$10,000
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

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.

Program Long-Term Success:

Program Short-Term Success:

Dr. Fraser Henderson will present his findings at the CSF "Think Tank" meeting held on Saturday, April 14, 2012.

Program Success Monitored by:

CSF Scientific Education & Advisory Board

Program Success Examples:

Program: CSF Regional Education Lectures and Awareness Programs (GuideStar Exchange,
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April 2014)

Budget:
$24,000
Category:
General/Unspecified
Population Served:
General Public/Unspecified
None
None

Program Description:

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.

Program Long-Term Success:

CSF plans to continue to start up new Chapter and Support groups around the country and continue to videotape the educational lectures so anyone who is interested can view them.

Program Short-Term Success:

The educational lecture and support group meetings have been an exciting program to watch grow.  We have successfully established CSF Chapter educational and support group prgrams in Cleveland, Denver, Washington DC, Utica, NY, Seattle/Oregon, Carolinas, Miami, New York City & Chicago.  In a very short period of time we have been able to provide information and support to many families at these quarterly events.  Over 78,000 people have viewed these lectures during the past year.

Program Success Monitored by:

CSF Board of Directors

Program Success Examples:

Program: Bobby Jones Fellowship (GuideStar Exchange,
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April 2014)

Budget:
$50,000
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

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

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: CSF Small Grant Award for Trainees (GuideStar Exchange,
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April 2014)

Budget:
$50,000
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

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.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

CSF Scientific Education & Advisory Board

Program Success Examples:

Program: Washington DC Chapter Development (GuideStar Exchange,
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April 2014)

Budget:
$25,000
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

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

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: CSF Hydrodynamic Symposium (GuideStar Exchange,
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April 2014)

Budget:
$30,000
Category:
General/Unspecified
Population Served:
Children and Youth (infants - 19 years.)
Adults
Physically Disabled nec

Program Description:

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

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: CSF Research Colloquium (GuideStar Exchange,
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April 2014)

Budget:
$25,000
Category:
General/Unspecified
Population Served:
None
None
None

Program Description:

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.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit Additional Information
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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.
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