annual report 2013

research I education I awareness leadership, vision, commitment to find a cure

2013 unite@night walks raised $150,000 I 2,000 walkers

29 Crest Loop, Staten Island, New York 10312 718-966-2593

Our 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 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 disorders. Many recognized world-class physicians, scientists and professionals agreed to collaborate and form a superior Scientific Education & Advisory

Board (SEA Board).

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 over one million families affected by CM, SM, and related disorders.

Board of Directors

Paul J. Farrell Chairman and Founding Member

Joe Fitzpatrick Vice Chairman and Founding Member

Raymond Cornelius Treasurer

Scott Gregerson Secretary

Robert Noble Director

Lory Watson Director and Founding Member

Michael N. Mikula, Board of Trustees Chairman

Simon J. Archibald, PhD Robert Tyre Jones IV, PsyD

Edwin B. Jordan Douglas E. Kindlon (Emeritus)

Adam Korn Richard E. Kuntz, MD

Sean Lilienfield, MD (Emeritus) Lady Trish Malloch-Brown

J. Thomas Megerian, MD, PhD Robert E. Rumphrey

Dorothy Poppe Executive Director

Andrea Grosz Marketing & Development Director

Cathy Poznik Chapter Coordinator

Kaitlyn Esposito Program Assistant

Board of Trustees – Bobby Jones Society

Staff

Scientific, Educational & Advisory Board

Allison Ashley-Koch, PhD - Duke University Medical Center

Ulrich Batzdorf, MD - David Geffen School Of Medicine At UCLA

Paolo Bolognese, MD - The Chiari Institute

Richard G. Ellenbogen, MD - University Of Washington

Clair Francomano, MD - Greater Baltimore Medical Center

David Frim, MD - University Of Chicago Medical Center

John D. Heiss, MD - National Institutes Of Health

Fraser C. Henderson, MD - Doctors Community Hospital

Bermans Iskandar, MD - University Of Wisconsin Hospital

Roger W. Kula, MD - The Chiari Institute

David Limbrick, MD, PhD - St. Louis Children’s Hospital

Mark Luciano, MD - The Cleveland Clinics Foundation

Dominic J. Marino, DVM, DACVS - Long Island Veterinary Specialists

John Oro, MD - Neurosurgery Center Of Colorado

Harold Rekate, MD - The Chiari Institute

Marcus Stoodley, MD - Macquarie University

Shane Tubbs, MD - University of Alabama at Birmingham

Edward C. Benzel, MD - The Cleveland Clinic Foundation

Timothy M. George, MD - Dell Children’s Medical Center Of Central Texas

Barth A. Green, MD - University Of Miami School Of Medicine

Victor Haughton, MD - University Of Wisconsin

Francis Loth, PhD - University Of Akron

Arnold Menezes, MD - University Of Iowa College Of Medicine

Miseo Nishikawa, MD - The Chiari Institute

Senior Advisory Board

Letter from the Chairman

As the end of another year approaches, we take the opportunity to reflect on the progress and achievements the Chiari & Syringomyelia Foundation made in 2013. Thanks to your generous gifts, support and participation, we accomplished many of the goals we set for 2013, and we continue to establish new and exciting events. As one of our most productive years draws to a close, I’d like to update you on the significant achievements we accomplished in 2013.

CSF continues to grow exponentially, as we have increased our efforts to raise awareness about Chiari malformation and syringomyelia. We now have twelve regional chapters in the United States, which offer free quarterly educational lectures for both physicians and patients. These

lectures are videotaped and then posted for public viewing on our brand new website, complete with mobile capability. In 2013, there were roughly 44,000 new visitors to the CSF website. At CSF, we often hear that some medical professionals are simply unfamiliar with what Chiari is—and we are determined to change this. We have put together an educational program called Consider Chiari with the objective to spark awareness, putting Chiari on the radar of medical professionals. In 2013, CSF’s unite@night brought 2,255 people together across the country, and in Canada. The number of walks more than doubled from sixteen last year to forty-one, and helped to raise awareness and upwards of $150,000 to support our programs. May 2013, we held our second annual Bobby Jones Classic for CSF golf tournament at the East Lake Golf Club in Atlanta, GA, the home of the FedEx Cup Tour Championship, and the home course of legendary golfer Bobby Jones. Several family members were in attendance, including Dr. Bob Jones IV, grandson of Bobby Jones. Tournament guests were also treated to informative presentations by two Bobby Jones historians: Sid Matthew and Dr. Linton Hopkins. The third Bobby Jones Classic for CSF will be held on May 19, 2014. Please consider joining us for this unique event. Visit www.bobbyjonesclassic.com for more information. In March, our annual Charity Ball in New York, featured our first “Casino Night” and a memorial for Heather Andrews, who passed away from complications caused by her Chiari and related conditions. In October, we held our third annual Dinner Dance for a Cure in Ohio, which included a brief presentation, dinner, dancing, and silent auction. We also recently completed our most prestigious event, the fourth annual Night of Light Children’s Gala, at the James Burden Mansion in New York City. This special evening included philanthropic guests, international ambassadors, illustrious musicians and artists, and world-class physicians who treat Chiari and syringomyelia. We were most fortunate to honor Mr. and Mrs. Michael Mikula for their continual support, Lord and Lady Malloch-Brown, and Prof. Rodney Grahame and Dr. Ulrich Batzdorf for their astounding clinical contributions to the field. There was a tremendous outpouring of support from Goldman

Sachs Gives, thanks in large part to Board of Trustee member Adam Korn. The evening also included a keynote speech from Mr. Duncan L. Niederauer, the CEO and Director of NYSE/Euronext. Funding relevant research is a top priority, and CSF continues to proudly sponsor lectures and conferences featuring doctors and scientists. The second CSF Hydrodynamics Symposium featured scientists from Europe, Australia, and the United States, who presented their research on Chiari malformation, syringomyelia, and hydrocephalus from an engineering and scientific perspective. On the clinical side, we sponsored the second CSF Research Colloquium in San Francisco, featuring speakers from China, Japan and the US. Fifteen speakers presented their research, and helped to form a consensus on craniocervical hypermobility. The meeting was filmed and the results will be published in a book. CSF continues to fund ongoing research projects: • Automated MRI-Based Parcellation of the Posterior Cranial Fossa • Mapping Perivascular Spaces in the Spinal Cord toward Improved Spinal Cord Flow Models

• Development of Numerical Model of Spinal CSF Dynamics

• Genetic Dissection of Chiari I Malformation CSF continues to develop a CM and SM National Patient Registry and has begun to work on this project alongside the National Institute of Neurological Disorders and Stroke at the NIH. We will continue to update you on its progress. It’s been a very productive year, as we continue to build a solid foundation and set our course for the future. Join the CSF community and stay up-to-date on upcoming news and events with periodic email updates. Just visit our website at www.CSFinfo.org, click on Contact Us at the top of the site, update your information, and we will add you to our email contact list. And please consider making your year-end tax-deductible contribution to CSF by donating on our website. Click the Donate button and fill out the form. If you prefer to mail your gift, please send in the envelope provided. Your continued generosity and support makes all this possible! Have a Healthy & Happy 2014! Paul J. Farrell Chairman

Letter from the Chairman (continued)

Greater Metropolitan Washington Area Chapter Educational Meeting

CSF Meets with U.S. Representatives September 9, 2013 – Washington DC

January 15, 2013 – Lanham, Maryland

Monte Carlo Night at the Charity Ball

NINDS Non-Profit Forum September 10-11, 2013 – Bethesda, Maryland

March 2, 2013 – Staten Island, New York

unite@night Celebration

Cleveland Chapter Educational Lecture September 16, 2013

March 20, 2013 – Cleveland, Ohio

Carolinas Chapter Educational Meeting

Greater Metropolitan Washington Area September 18, 2013 – Durham, North Carolina

Chapter Educational Meeting

April 17, 2013 – Lanham, Maryland

CSF Think Tank Meeting

Mindbrain/Hindbrain Malformations and Hydrocephalus: Understanding the Causes, Consequences and Gaps in Understanding

April 27, 2013 – New Orleans, Louisiana October 8, 2013 – Bethesda, Maryland

2nd Annual Bobby Jones Classic for CSF May 20, 2013 - Atlanta, Georgia

Greater Metropolitan Washington Area Chapter Educational Meeting

January 15, 2013 – Lanham, Maryland

unite@night Walks

June 1-30, 2013 CSF Research Colloquium

Consider Chiari Lecture

June 18, 2013 – Durham, North Carolina

October 19, 2013 – San Francisco, California

Dinner Dance for a Cure

October 26, 2013 – Twinsburg, Ohio

2nd International CSF

Hydrodynamics Symposium Miami Educational Lecture

June 24, 2013 – Manhasset, New York October 28, 2013 – Miami, Florida

Greater Metropolitan Washington Area

Night of Light Gala

Chapter Educational Meeting November 9, 2013 – New York, New York

July 17, 2013 - Lanham, Maryland

Chiari Awareness Month-Crush Chiari Campaign Cleveland Chapter Educational Lecture November 21, 2013 – Cleveland, Ohio

September 1, 2013

For more information about CSF events, visit http://csfinfo.org/events

2013 Calendar of Events

awareness

research

education

Research

RESEARCH ENDOWMENT CSF has started a $5 million dollar Research

Endowment Fund, so that there will ALWAYS be enough money for critical research into these

debilitating conditions. We’re on our way, but we need to raise additional funds

to build this endowment.

RESEARCH GRANTS We’ve funded five research grants. Two of these

projects have since been published and we intend to fund additional projects in 2014!

INTERNATIONAL PATIENT REGISTRY The NIH/NINDS is assisting CSF with the formation of a national patient registry and database. Physicians and

scientists from around the globe will study demographics, epidemiology, presentation and natural history,

genetics-associated tissue diseases, spinal anomaly/instability, imaging, treatment, and outcomes.

RESEARCH COLLOQUIUM CSF will be hosting our third research colloquium in 2014 and our

Third Hydrodynamics Symposium in France in 2015.

RESEARCH SYMPOSIUM We’ve organized and held eleven national and international

gatherings of the brightest minds in neuroscience & engineering!

Education

awareness

research

education

COLLABORATION We’ll be working with the Hydrocephalus and

EDS groups to collaborate on joint educational lectures.

EDUCATIONAL LECTURES We hope to expand our Educational Lecture

program around the country. We currently have twelve regional chapters and our goal is

to host lectures in all twelve regions. We have hosted lectures in the Mid-Atlantic, Greater

Metropolitan Washington, Carolinas, Southeast Regional, Great Lakes East and West, Northwestern, and Mountain

regions. We’re currently working on a Midwest lecture and a Western region lecture. We’ll be hosting an

educational lecture in Miami which will be conducted completely in Spanish.

CONSIDER CHIARI CAMPAIGN CSF has proudly initiated the “Consider Chiari” campaign. The

Objective of the ongoing campaign is to spark awareness and put disorders such as Chiari malformation, syringomyelia and other related disorders on the radar of medical professionals. We’ve

successfully implemented two of these programs in Chicago and in Cleveland, and are planning two in 2014.`

Awareness

awareness

research

education

UNITE@NIGHT The CSF unite@night walks are only in their third year, and they have been growing exponentially since 2012. In 2013, the number of walks doubled (not taking into

account multiple Solo Walks) and the amount of total dollars raised has more than doubled! Our goal for

2014 is to double the number of walks again and possibly add a run. These walks bring together people suffering with the devastating effects of

CM, SM, and related disorders.

CHAPTERS Since 2007, CSF has created 12 regional Chapters to

educate the medical, allied sciences, and lay community; increase awareness; raise funds for programs and research;

provide support and advocacy for local areas; and locate and register individuals and families affected by these disorders.

We’re in the process of creating many CSF Co-Ops to better serve communities by providing education & awareness on a local level!

FUNDRAISERS

CSF is only seven years old, yet we’ve already successfully set up Several annual and recurring fundraising events in cities across the

United States! We fully intend to keep these fundraisers going strong, over and over again – with your help, of course!

Our events include: Bobby Jones Classic for CSF (Atlanta, GA) • Night of Light Children’s Gala (DC/NYC)

unite@night walks nationwide • Cleveland, OH events •Staten Island, NY events Chicago, IL event • Miscellaneous member fundraisers around the country

ACCOUNTABILITY

CSF is a proud Guidestar Gold Seal holder as well as a BBB Charity Seal holder. In addition, we have applied for the Health On the Net

(HON) Code. We have worked tirelessly to provide accurate, scientific information about Chiari malformation, syringomyelia and all related disorders. We also believe in complete financial

accountability for all YOUR donations and we have kept our costs in line with the gold standards… but we need increased funding. We

need to increase our operating costs in order to move forward and accomplish our goals.

Dairy Queen Night

CSF Educational Events and Advocacy

Educational Lecture January 15 – Washington DC

Consider Chiari Lecture June 18 – Durham, NC

Educational Lecture March 20 – Cleveland, OH

International CSF Hydrodynamics Symposium January 24 – Manhasset, NY

CSF Visits Capitol Hill September 9 – Washington DC

Dairy Queen Night

CSF Fundraising Events

Casino Night at the Charity Ball March 2 – Staten Island, NY

Night of Light Children’s Gala November 9 – New York, NY

unite@night Walks June - Across the United states

Mr. Duncan Niederauer CEO and Director, NYSE Euronext

Night of Light Children’s Gala

Bobby Jones Classic May 20 – Atlanta, GA

Dinner Dance for a Cure October 26 – Twinsburg, OH

2013 Summary of Activities

Support and Revenue

Contributions, Gifts and Grants $ 47,165

Program Service Revenue $ 9,183

Membership Dues $ 0

Net Income from Special Events $ 560,153

Other Income $ -1,241

Total Support and Revenue $ 615,260

Expenses

Program $ 315,712

Administration $ 60,326

Fundraising $ 99,461

Total Expenses $ 475,499

Net Income $ 139,761

Diamond ($100,000 and above)

Goldman Sachs Gives

Bobby Jones Society ($25,000 - $99,999)

Dipippa Nusbaum Advertising, Inc.

The Farrell Law Firm, P.C.

Michael and Denise Mikula

Platinum ($10,000 - $24,999)

Candida Lancaster

M. V. Mayo Charitable Foundation

Doctors Community Hospital

Gold ($5,000 - $9,999)

Dr. and Mrs. John Oro

Truist Comprehensive Distribution

Dr. Fraser Henderson

Asheville Eye Associates

Mr. and Mrs. Richard W. Courts IV

Alston & Bird LLP

James and Susan Johnson

Judith A Miller

Long Island Veterinary Specialists

Tucker, Midis & Owen, LLC

Silver ($1,000 - $4,999)

Cambridge Wealth Advisors, LLC Clifford Brady

Doctors Community Hospital John and Mary Ellen Imlay

Andrew Van Eekeren Morrison Management Specialists, Inc.

William Blalock Dr. Daniel Barrow

Richmond County Savings Foundation Charity Ball

Aetna Foundation, Inc North Shore LIJ Health System

Brenda Yung Joseph Salvani

Five Star Sheets, LLC Community Foundation for Southeast Michigan

Keybank National Association Forest City Enterprises

Anthony and Nancy Gould Rob & Amy Frumkes

Duncan and Alison Niederauer Network for Good

Richard & Mary Smith Paul and Patricia Farrell

William Wardlaw Codman

Benjamin Mottola Roy and Vicki Maddox

Mr. and Mrs. Ellis Parker Myles Koby

Martin Chavez and Adam Norbury Randall & Jan Churchill Kell

Dr. Rondi K. Walker Howard Shafran

Convent of the Sacred Heart Merritt P Dyke

Bronze ($500 - $999)

Elaine Webb Dr. and Mrs. Mark & Gina Luciano

David and Joann Worsencroft Dawn Pushman

John Esposito Remy Gunn

Bob and Toni Rumphrey Empire State Bank

Nicole McGinnis Heather Allen Cline

Dorothy Poppe Tony and Rochelle Budroe

Jeffrey Peoples Solon Italian Club Foundation

Wendy Greenseich James & Denise Kent

Brenda Yung Lucinda S Ionno Rev. Trust

Sharon Dymnioski Ken Radigan

Ryan Carter Celina Holmes-Smith

Andrew Wright Rosario Sanchez

Sal DeMatteo Regina Rath

Anthony and Nancy Bowe Jeff & Patty Kosty

Denise Aversano Senator Andrew Lanza

Ralph Mancini Jason Andino

Rich Pinskey Robert Kaplan

Bobby and Dell Rearden Peter Finnegan

Greg Wareham Dina Gurney

Penny and Richard Meinke Barbara Yatsevitch

Walmart Foundation Lions Club

HM Insurance Company Carla Brouman-Bailey

Carole Corcoran

Silver ($1,000 - $4,999)

Stiles Kellett Eileen T Divietri

James & Cathy Poznik Dwayne Harold Sherland

Ohio Clerk of Courts Association GlaxoSmithKline Foundation

James and Margaret Curtacci Frank Arlia Jr.

Edward Adam Dolan Lawrence Cleary

Dr. and Mrs. Timothy Farrell Waltonville Community Unit No. 1 Activity Fund

William and Diane Malone James Ingvoldstad

Dr. and Mrs. Edward Benzel Shirley Cleaver

Dr. Linton Hopkins Ronald Roy Parks

Donald & Marie DeRoia John & Joan Cleary

Bunny Winter Mike Burns

Harry Gilham Jeanne Brooks-Gunn

Michael W. and Joan S. Walters Eric Meinke

Porter, Wright, Morris, & Arthur LLP Mike Ambrose

Philip J. Branson Jill Chinn

Five Star Transportation Shelley McMullin

Greater Kansas City Community Foundation Douglas Wertheimer

Rodney Grahame Dr. and Mrs. Alexander and Thais Mark

Hartford City Paper John and Mai Cleary

Dr. Ulrich Batzdorf Dr. and Mrs. Richard & Sandy Ellenbogen

The Boards and Staff of the Chiari & Syringomyelia Foundation wishes to say “thank you” to the individuals and organizations who generously

donated to our organization during the 2013 fiscal year. What CSF accomplishes each year with these gifts is immense, and we are thankful for your generosity.

We are achieving great things, and it’s thanks to you.