You have the opportunity to light the way for an estimated 300000 persons in the United States

29 Pages·2010·1.84 MB·English

“You have the opportunity to light
the way for an estimated 300,000
persons in the United States alone,
and an untold number of families
from around the world…”
e
saturday, the thirteenth of november
two thousand ten
anderson house
washington, district of columbia
Gala Patrons
her majesty queen noor of jordan
nicholas, 14th lord fairfax of cameron
lord and lady malloch-brown
the honorable and mrs. christopher burnham
mr. randy theken
Steering Committee
ms. dorothy poppe
doctor and mrs. fraser henderson
mr. paul farrell
mr. and mrs. scott gregerson
Special Thank You
mr. joan berkhemer
ms. gay cioffi
mr. marcos galvany
mr. richard johnson
doctor alexander mark
ms. meghan mccall
mr. andre shearer
mr. michael sheppard
Gala Highlights
cocktail reception
Te Olmsted Gallery
welcome toast, invocation and dinner
Te Ballroom
chiari & syringomyelia foundation’s vision
Paul Farrell
my story
Mackenzie Mathis
Ellen Icochea
patron awards
Her Majesty Queen Noor of Jordan
Nicholas, 14th Lord Fairfax of Cameron
Lord and Lady Malloch-Brown
Te Honorable and Mrs. Christopher Burnham
Mr. Randy Teken
musical entertainment
Joan Berkhemer, Violinist
Michael Sheppard, Pianist
Meghan McCall, Soprano
Marcos Galvany, Accompanist
e
Gala Supporters
ray of hope research sponsor
Mr. Randy Teken
$125,000
gala sponsors
Mr. and Mrs. Michael Mikula
Mr. and Mrs. Richard Tripodi
$30,000
champagne & wine sponsor
Doctors Community Hospital
$20,000
musical entertainment sponsor
Lord and Lady Malloch-Brown
$10,000
invitation sponsor
Aetna Inc.
$5,000
program sponsor
Long Island Veterinary Specialists
$5,000
stationery sponsor
Te Farrell Law Firm, LLP
$5,000
Board of Directors
paul j. farrell
Chairman & Founding Member
Commack, New York

james e. feisthamel
Director
Frankfort, New York
joe fitzpatrick
Vice Chairman & Founding Member
Naperville, Illinois

steve kragrud
Treasurer
Beaverton, Oregon  
cathy poznik
Secretary
Twinsburg, Ohio

lory watson
Director & Founding Member
Naperville, Illinois
Executive Director
dorothy poppe
Staten Island, New York
Board of Trustees
michael n. mikula, chairman
Owner, Excel Container
simon j. archibald, phd
Chief Scientifc Ofcer, Integra Lifesciences Corporation
richard e. kuntz, md
Senior Vice President, Medtronic, Inc.
sean lilienfeld
Vice President - Clinical Research & Medical Afairs, Codman & Shurtlef, Inc.
robert tyre jones iv, psyd
Clinical Psychologist in Private Practice
edwin b. jordan
Ofcer, Intercity Investments
douglas e. kindlon
Owner, Edgewood Golf Course
robert e. rumphrey
Vice President of Sales, Command Web Ofset Company
Medical Research Board
allison ashley-koch, phd - Duke University Medical Center
ulrich batzdorf, md - David Gefen School of Medicine at UCLA
edward c. benzel, md - Te Cleveland Clinics Foundation
paolo bolognese, md - Te Chiari Institute
richard g. ellenbogen, md - University of Washington
timothy m. george, md - Dell Children’s Medical Center of Central Texas
barth a. green, md - The Miami Project To Cure Paralysis
University of Miami School of Medicine
victor haughton, md - University of Wisconsin
john d. heiss, md - National Institutes of Health
bermans iskandar, md - University of Wisconsin Hospital
roger w. kula, md - Te Chiari Institute
francis loth, phd - University of Akron
dominic j. marino, dvm, dacvs - Long Island Veterinary Specialists
arnold menezes, md - University of Iowa College of Medicine
miseo nishikawa, md - The Chiari Institute
Letter from the Chiari & Syringomyelia Foundation
On behalf of the Chiari & Syringomyelia Foundation (CSF), it is our pleasure to
welcome you to the CSF Night of Light Children’s Gala. We are thrilled to have you
join us for this wonderful event.

We are honored to be joined tonight by our distinguished patrons, whose collective
presence has made this an evening to remember. Please join us in welcoming Her
Majesty Queen Noor of Jordan; Nicholas, 14th Lord Fairfax of Cameron; Lord and Lady
Malloch-Brown, the Honorable and Mrs. Christopher Burnham, and Mr. Randy Teken.

Tonight, we hope you enjoy the company of good friends, while you learn about CSF
and the work we are doing to fnd a cure for Chiari malformation (CM) and syringomy-
elia (SM). Tese little known but devastating neurological disorders afect over 300,000
people in the United States alone, and many more worldwide.

Your support and presence this evening is greatly appreciated and energizes CSF in
our pursuit to fund a research endowment, which will enable us to fund much needed
research into the causes of and, ultimately, the cure for CM and SM. Our goal for this
evening’s Gala is to provide funding for a collaborative research project, headed by
Dr. Fraser Henderson, into the connection between CM and autism spectrum
disorders (ASD). CSF has had several meetings with the National Institutes of Health
(NIH) to discuss funding for research related to CM and SM. Documentation to
establish a connection with other diseases and disorders, such as autism, goes a long
way to opening doors at the NIH and obtaining much needed funding.

On behalf of CSF, have a wonderful evening and thank you for your support.
Paul J. Farrell Dorothy J. Poppe
Chairman Executive Director
Letter from Dr. Fraser Henderson
I want to thank you for your generous contribution and to express the great appreciation
of the Chiari & Syringomyelia Foundation, of our extended research group, and of the
children and adults who have been disabled by Chiari malformation and syringomyelia.
To be 15 years old, bright and optimistic, and then to become totally disabled with pain,
weakness, sensory loss and periods of confusion and insomnia is a great human tragedy.
Many patients are given psychiatric diagnoses because most physicians are unaware of
the profoundly disabling and varied neurological defcits caused by Chiari malformation.
A greater tragedy occurs when a child already diagnosed with autism spectrum disorder
(ASD) develops the neurological defcits associated with Chiari malformation: the latter
are assumed to be part of ASD and the neurological Chiari defcits fail to be diagnosed
because of the overarching diagnosis of autism.
Tis gala is to thank you, who have given of yourselves, to help this vital research move
forward. In addition to funding this groundbreaking research, our hopes are to continue
to raise awareness of the disorders associated with Chiari malformation. Te dinner and
the talented performers are a gift from our sponsors. Your contribution will directly help
fund the CSF Autism Spectrum Disorder Study. 
On behalf of our research group from many institutions around the world, I want to
thank you for your generosity of spirit, and your ongoing support and encouragement
in this cutting edge endeavor.
Dr. Fraser Henderson
CSF Autism Spectrum Disorder Study Chair
Te CSF Project to Analyze the Prevalence of Chiari Malformation
within the Autism Spectrum Disorder Population
Tere appears to be a substantial underserved population of children and adults
harboring both a Chiari malformation and diagnosis of autism spectrum disorders
(ASD). Te ASD population of 2 million is increasing by 28,000 new cases every
year, at least 1 per 150 live births (Bertrand, J. Pediatrics Vol. 108 No. 5 Nov 2001),
and accounts for expenditures of $35 billion per year within the US.
Children with Chiari frequently have a tendency to headaches, neck pain, speech and
swallowing difculties, sensori-motor disorders, gastro-esophageal refux, disordered
respiration and sleep apnea - the same fndings observed in the ASD population
(Rimland, B. Autism Research Review International, 2005). Other shared defcits
include loss of smooth ocular pursuit, dysarthria, abnormal motor initiation, disordered
neuro-endocrine modulation within the reticular activating system and possibly
cerebellar mediated alterations of cerebral activity (Courchesne, E. Neuroanatomic Imaging.
Suppl 781-790, 2001).  Tis overlap of characteristics suggests that these disorders may
be co-morbid conditions.  In the course of routine surgical correction of Chiari disorders,
CSF researchers have measured substantial improvement in pain, function, and quality of
life in ASD patients (Bolognese, Kula 2010; Henderson 2008, 2010).
Patients diagnosed with ASD at 1-3 years of age rarely undergo neurological assessment
or MRI to look for other co-morbidities, such as Chiari malformation. In the ASD
population, therefore, the opportunity for diagnosis and treatment of Chiari
malformation is missed.
Te CSF sponsored research project has three goals:  frst, to establish the prevalence
of Chiari related disorders within the population of ASD; second, to develop clinical
biomarkers to more readily select which patients within the ASD population need further
evaluation; and third, to determine in a randomized, prospective manner whether surgical
correction of these established neurological disorders provides a signifcant
improvement in neurological function, pain and quality of life in the afected children
and adults. 
Te investigators believe that this proposed research represents an important opportunity
to pursue a breakthrough in the treatment of some of the manifestations of autism
spectrum disorder and Chiari malformation.