12988780 insides.indd - Bachmann-Strauss Dystonia & Parkinson ...

PERSPECTIVES 

2 0 0 4 A N N U A L R E P O R T

PERSPECTIVES 

Doctors, patients, scientists, parents, contributors, volunteers—their 

involvement and their points of view are different but their impact on our 

work is tremendous. This annual report is dedicated to all those who help 

make a lasting imprint. 

Dystonia is a neurological muscle disorder that causes uncontrollable, 

painful spasms in one or more parts of the body. 

• While not widely known, dystonia affects an estimated 500,000 in North 

America alone – more than muscular dystrophy, Huntington’s disease and Lou 

Gehrig’s disease combined. 

• Different forms of the disease affect the face, neck, throat, eyelids, arms, legs 

or torso. This devastating disorder can appear in children and in adults alike. 

Parkinson’s disease is a disorder of the central nervous system caused 

by a change in the part of the brain that controls movements like walking 

and balance. 

• Symptoms include tremor, slowness of movement, muscle tightness and 

problems with balance. 

• Parkinson’s may appear at any age, but it’s most common in people over 

50 and rare in those under 30. 

Right now, the causes are unknown and there is no known cure for 

either disease.

HELEN MILLER & BONNIE STRAUSS 

Bonnie Strauss, founder and president of The Bachmann- 

Strauss Dystonia & Parkinson Foundation, has long 

believed that researchers will uncover a link between 

these two neuromuscular diseases. For more than 25 

years, Bonnie has lived with spasmodic torticollis—a form 

of dystonia that causes involuntary neck spasms. Both 

her mother and her grandmother had Parkinson’s disease. 

The Power of Collective Effort 

The impressive progress that was made in fiscal year ‘04 is testament both to 

the power of collective effort and the tangible impact of individual diligence. 

The scope of our investments in research enabled scientists to delve further 

into the possible causes of dystonia and Parkinson’s disease, from genetics 

to environmental toxins, and explore how these diseases affect both motor 

functions and cognition. This substantive work, which brings us steps closer to 

finding better treatments and cures to help millions of people, is made possible 

by the generosity of so many supporters. We extend our sincere thanks to all of you. 

This was a solid year for our Foundation, underscored by achievement in 

research, positive collaborative efforts, and new opportunities for diversifying 

our funding base. It was also a time of transition as Helen Miller became our new 

Executive Director, succeeding Margie Walden. 

This was the first time that a grant made by our organization was underwritten 

by individuals. With the goal of helping their son Jacob, who has dystonia, Linda 

and Gregg Spielberg funded two specific bodies of work (see pages 6 and 8). 

The Spielberg’s also reached out through personal letter-writing campaigns, 

as did Carolyn and Chris Von Der Ahe, and Matthew and Jonathan Zames, which 

generated additional new dollars this year. Special thanks go to 15-year-old 

Lauren Von Der Ahe and 12-year-old Nathan Spielberg for their entrepreneurial 

spirit and very successful efforts. These fund raising initiatives represented 

significant growth in non-event contributions and augmented the revenue from 

our golf invitational and other events. 

Collaborations occurred on many fronts this year. We continued to work with the 

Michael J. Fox Foundation for Parkinson’s Research to further our understanding 

of dyskinesia. We were proud to add our voice to the compelling call for stem cell 

research, which we believe has the potential to help millions of people. We are 

also grateful to two prominent leaders for doing what they can to build support 

for our work: to Jenny Craig for donating a portion of the proceeds from her 

autobiography to our Foundation, and to former U.S. Attorney General Janet 

Reno, who spoke at our golf invitational. 

We would like to express our tremendous gratitude to the members of our board, 

our volunteers, donors and staff. Your support has made a tangible difference; 

your continued involvement will enable us to make even greater inroads to help 

millions of patients and their families. 

Helen H. Miller, Executive Director Bonnie Strauss, President 

3

Advancing the Pace of Research 

In fiscal 2004, funding from our organization enabled researchers to probe 

further into the causes of dystonia and Parkinson’s disease. In some instances 

this support funded new studies; in others it enabled promising work in progress 

to continue. Significant advances on a number of fronts received coverage in 

scientific journals this year. Among them: 

• Links between environmental toxins and the development of Parkinson’s 

disease features in laboratory animals were found in a study, further 

supporting the concept that the illness in humans occurs as a result of exposure 

to toxic substances that are present in the environment. 

• A new study that produced a genetically-altered mouse model with early- 

onset dystonia shed light on this form of dystonia that occurs in humans 

from childhood up to age 26. This finding may help to better understand the 

pathophysiology of this disorder to develop more effective therapies. 

• In a new discovery, protein clumps were found in an area of the brain around 

the pedunculopontine nucleus (PPN) in some people with dystonia. 

In 2004 The Bachmann-Strauss Dystonia & Parkinson Foundation awarded 

research grants totaling $847,444. These were made to individual researchers 

working at medical institutions around the world, as well as to the Dystonia 

Medical Research Foundation and to the Michael J. Fox Foundation, to supplement 

the grants made through their organizations. 

Direct Grant Awards 

Following are summaries of the grants awarded directly by our organization in 

2004 to individual researchers. This work will be conducted in 2005. The selection 

is made by our Scientific Advisory Board following Requests for Proposals and a 

rigorous review process. 

Development Origins of Dystonia 

Pradeep G. Bhide, PhD 

Massachusetts General Hospital, Charlestown, MA 

This investigation centers on whether early-onset dystonia, which may appear 

in children 1-10 years of age, stems from defective developmental processes 

caused by mutations in the gene responsible for this disease. 

4 

ZHENYU YUE, PhD 

A ssis tant Professor/ Head of L aborator y, Depar tment of Neurology 

Mount Sinai School of Medicine 

“ One goal in our lab is to identify groups of neurons or 

circuits that are particularly vulnerable to the mutated 

proteins found in dystonia. We believe that will help 

provide new targets for future drug interventions.”

Direct Grant Awards (continued) 

Proteomic Analysis of Torsin Effectors 

& Functional Interactions Pertaining to Dystonia 

Guy A. Caldwell, PhD and Kim A. Caldwell, PhD 

The University of Alabama, Tuscaloosa, AL 

At least 14 hereditary dystonias are known to exist, but not all the genes 

responsible have mutations. Using the roundworm C. elegans as an animal model, 

this will identify possible genes for human geneticist’s study. 

*Neuropathology in DYTI Dystonia 

Kevin McNaught, PhD and C. Warren Olanow, MD, FRCPC 

Mount Sinai School of Medicine, New York, NY 

A severe form of dystonia is caused by a defect in the DYT1 gene, which results in 

an abnormal form of the protein torsinA. This project will determine if mutations 

in DYT1/torsinA causes nerve cell death in the brainstem and other regions in 

patients with DYT1 dystonia. 

Can Environmental Proteasome Inhibitors Cause Parkinson’s Disease? 

Kevin McNaught, PhD and C. Warren Olanow, MD, FRCPC 


This project aims to determine if exposure to environmental toxins derived 

from plants and food can cause Parkinson’s disease features in rats, since this 

represents a likely means by which humans may be exposed. 

Studies on Neurotoxin-Induced Early Signaling Mechanisms 

Venugopalan Nair, PhD, Stuart C. Sealfon, MD and 

C. Warren Olanow, MD, FRCPC 


This investigates how neurons respond to toxins before the cells have died or 

show symptoms of neuronal dysfunction. 

Studies Aimed at Identifying a Gene for Cervical Dystonia 

Laurie Ozelius, PhD, Albert Einstein College of Medicine, Bronx, NY 

and Susan B. Bressman, MD, Beth Israel Medical Center, New York, NY 

Cervical dystonia, characterized by twisting contractions of the neck muscles, is 

the most common form of dystonia in adults. This study looks at the genetic links 

and commonalities among 20 families. 

Characterization of Transgenic Mice Expressing Wildtype and Mutant TorsinA 

P. Shashidharan, PhD and Ioanna Armata, Graduate Student 


TorsinA, the protein discovered to be encoded by the DYT1 dystonia gene, will be 

further examined to determine how it impacts cellular function. 

Genetic and Epidemiological Assessment and Analysis of Idiopathic Dystonia 

Sigurlaug Sveinbjornsdottir, MD and John Hardy, PhD 

Landspitaili University Hospital, Reykjavik, Iceland 

This aims to map the annual incidence of dystonia in Iceland, looking at genetic 

linkages and whether there is a genetic defect causing non-generalized dystonia. 

6 

THOMAS HAELBIG, MD 

Dr. Haelbig was awarded The Mitchell F. Brin Fellowship for his 

work in movement disorders. 

“ These disorders affect motor skills and may also cause 

emotional, cognitive and behavioral abnormalities. 

Some of our work over the past year has been focused 

on measuring those aspects to better understand and 

address their impact.”

Direct Grant Awards (continued) 

PINK1: Distribution, Function and Effects of Loss-of-Function 

Jan-Willem Taanman, PhD and Anthony H.V. Schapira, DSc, MD, FRCP 

Royal Free University College Medical School, London, England 

This study of the function of the PINK1 gene aims to determine under which 

circumstances this gene modifies proteins and unravel how mutations of the 

gene result in disease. 

Neuropathology of TorsinA Transgenic Mice 

Ruth Walker, MD and P. Shashidharan, PhD 


Further studies on transgenic mice will look at the connections between 

neurons in different brain regions to see if cells have died, if there are signs of 

cell damage to the brain, and to better understand how the dystonia gene affects 

the brain. 

*Generation of Dystonia Mouse Model by a BAC (Bacterial Artificial 

Chromosome) —Mediated Transgenic Approach 

Zhenyu Yue, PhD 


Using a newly-developed strategy of studying biological functions, this 

investigation on a mouse model will help identify the primary neuron types that 

are affected and responsible for human dystonia symptom, and will also examine 

possible cellular dysfunction and stress. 

*Funded through the generosity of Linda and Gregg Spielberg of Louisville, KY in honor of their son, Jacob. 

Our funding to the DMRF in 2004 helped provide 

support to the following work: 

Fellowships 

Alberto Espay, MD 

Toronto Western Hospital 

Toronto, Canada 

Pathophysiology of Psychogenic 

Dystonia 

Grants 

Oliver O. Bandmann, MD, PhD 

University of Sheffield 

Sheffield, England 

A Clinical and Genetic Study of 

Dopa-Responsive Dystonia 

Anne J. Blood, PhD 

Massachusetts General Hospital 

Boston, MA 

Using fMRI to Compare Motor and 

Somatosensory Abnormalities in 

Dystonia 

8 

Joseph Classen, MD, and 

Markus Naumann, MD 

University of Wuerzburg, Germany 

Pathophysiology of Dystonia 

Jennifer Friedman, MD 

Massachusetts General Hospital 

Boston, MA 

Motor Learning in DYT1 Dystonia 

Rose E. Goodchild, PhD 

Columbia University 

New York, NY 

Investigating the Role of TorsinA in the 

Nuclear Envelope 

Phyllis I. Hanson, MD, PhD 

Washington University 

St. Louis, MO 

Functional Analysis of TorsinA 

Brett Lauring, MD, PhD 

Columbia University 

New York, NY 

Torsin A: Biochemical Characterization 

and Identification of Binding Proteins 

Joris N. Leijnse, PhD 

Kleinert Institute for Hand 

and Microsurgery 

Louisville, KY 

Anatomical Variations as Predisposing 

Factors for Focal Dystonia in the 

Musician’s Hand 

Yuqing Li, PhD 

University of Illinois at 

Urbana-Champaign 

Pathophysiology of DYT1 Dystonia: 

Conditional Tor1a Mutant Mice 

Bachmann-Strauss is the leading organization 

actively looking at the interface between dystonia 

and Parkinson’s disease. 

Study of Dyskinesia in Parkinson’s disease 

patients ongoing 

For a third year, our Foundation collaborated with the Michael J. Fox 

Foundation for Parkinson’s Research for a study of dyskinesia—the 

uncontrollable movements that often characterize one of the side effects of 

Parkinson’s disease treatment. The following researchers were funded: 

Patrick Brundin, MD, PhD and M. 

Angela Cenci, MD, PhD 

Lund University, Lund, Sweden 

Mechanisms of Graft-Induced Dyskinesias 

in an Animal Model of Parkinson’s Disease 

Peter Carlen, MD, FRCP 

Toronto Western Hospital, 


The Role of Abnormal Gap Junction 

Communication in the Generation of 

Levadopa-Induced Dyskinesia in 

Parkinson’s Disease 

Robert Chen, MSc, FRCP 

Toronto Western Hospital, 


A Trial of Low Frequency Repetitive 

Transcranial Magnetic Stimulation for 

Treatment of Dyskinesia 

9 

Lesilee S. Rose, Ph.D. 

University of California, Davis 

The OOC-5 Protein, a C. elegans Model 

for Studying Torsin Protein Function 

Philip J. Thomas, PhD 

University of Texas Southwestern 

Medical Center 

Dallas, TX 

Structural Studies of TorsinA 

Gonzalo E. Torres, PhD 

University of Pittsburgh 

Pittsburgh, PA 

Cellular and Molecular Function 

of TorsinA and the Dystonia 

Linked Mutant 

Alan Crossman, PhD, DSc 

University of Manchester, 

Manchester, England 

Erwan Bezard, PhD 

French Institute of Health and Medical 

Research (INSERM), Paris, France 

Anatomical and Neurological 

Characterization of Basal Ganglia 

Neuropeptides in Levadopa- 

Induced Dyskinesia 

Deniz Kirk, MD, PhD 

Lund University, Lund, Sweden 

Christian Winkler, MD 

Hanover Medical School, Germany 

Reversal of Dyskinesias In-Vivo Gene 

Transfer of L-DOPA Using 

Adeno-Associated Viral Vectors

CONSTANCE LOWENTHAL 

Cons tance was diagnosed with Blepharospasm 2½ years ago. 

Blepharospasm is a form of dys tonia that causes excessive blinking. 

“ Treatment allows me to keep my eyes open and to blink 

normally. Without it, I feel in danger as a pedestrian 

crossing the street because my eyes close against my 

will, which affects my peripheral vision.” 

Speaking Up, Reaching Out 

The Imperative of Stem Cell Research 

With the conviction that stem cell research holds tremendous promise for millions 

of people, we added our voices to advocate for government funding. This past 

spring we went to Washington, D.C. to meet with Senator Arlen Specter (R-PA) 

to urge his continued support of this issue. A follow-up bipartisan reception 

was held in the fall at the home of Bonnie and Tom Strauss to gather additional 

support for Senator Specter’s efforts in championing biomedical research. 

Since cell death is a hallmark of Parkinson’s disease, for example, it is possible 

that stem cells could be used to identify the regions where neurodegeneration 

occurs or they could be helpful in identifying cell types. If this is the case, then 

it may be possible to graft cells back into the region of the brain. Its potential 

is less great for dystonia at this point because it is still not known whether cell 

death occurs in dystonia. 

Advocating for Change 

Joining forces with the Dystonia Medical Research Foundation and a contingent 

of dystonia patient-advocates in an “Advocacy Day”, we visited elected 

representatives on Capitol Hill to emphasize several important public policy 

issues. Among them: reimbursement for hospital outpatient clinics for BOTOX ® 

and other treatment therapies used by dystonia patients and the rare disorder 

community; increased funding for the National Institutes of Health (NIH) budget; 

and calling on the House of Representatives to pass S. 1053, The Genetic 

Information Nondiscrimination Act of 2003. 

11

Building Knowledge 

Helping Patients and Families 

This fall there was a 30% increase in attendance at our symposiums on 

Parkinson’s disease and dystonia as patients, families and healthcare 

professionals came to learn about the latest research and treatments and to 

pin their hopes on cures. Held at Mount Sinai Medical Center in New York City, 

the free programs featured presentations by specialists and a rare opportunity 

for patients to ask direct questions of the doctors. Speakers’ topics focused on 

what goes wrong in dystonia, surgical approaches to dystonia, the genetics of 

dystonia and Parkinson’s disease, and pain in Parkinson’s disease: mainstream 

and alternative approaches. We are grateful to Teva Neuroscience and 

GlaxoSmithKline for funding this event. 

Scientists’ Attend Think Tank on Dystonia 

Susan Bressman, MD, and 

Xandra Breakefield, PhD 

Kim Katzovitz, José Obeso, MD and 

Mariana Olanow 

Noted scientists and clinicians came 

together in New York for a one-day 

Think Tank that centered on the 

pathophysiology of dystonia. Held 

for a third year, this important forum 

enabled researchers from around 

the globe to share knowledge and 

discuss new research developments 

in an effort to better understand what 

causes this devastating disorder. 

Key to their focus this year was 

the significance of the recent 

discovery of protein clumps found 

in an area of the brain around the 

pedunculopontine nucleus (PPN) in 

some people with dystonia. 

The Think Tank was co-chaired by 

C. Warren Olanow, MD, FRCPC, 

Professor and Chair, Estelle and 

Daniel Maggin Department of 

Neurology, Mount Sinai School of Medicine, and Susan Bressman, MD, Chair, Allan 

and Barbara Mirkin Department of Neurology, Beth Israel Medical Center. We are 

grateful to Teva Neuroscience for providing funding for the 2004 Think Tank. 

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MICHELE TAGLIATI, MD 

A s s o c i a t e P r o f e s s o r o f N e u r o l o g y ; D i v i s i o n C h i e f , 

M o v e m e n t D i s o r d e r s , M o u n t S i n a i M e d i c a l C e n t e r 

“ Cruz Rodriguez became severely disabled from 

progressive Parkinson’s disease. One year after 

deep brain stimulation surgery, his quality of life is 

dramatically improved and he is tremor-free for the 

first time in 15 years.”

2004 Think Tank 

Top left: Drs. Andres Lozano and José Obeso with 

Think Tank co-chair C. Warren Olanow, MD, FRCPC 

Bottom left: Daniel Perl, MD, Stanley Fahn, MD, and Mitchell Brin, MD 

Top right: Linda and Gregg Spielberg and Chris Von Der Ahe 

Bottom right: Kevin McNaught, PhD 

14 

15

Cause and Effect 

The spirit of philanthropy was front and center this year as long term 

supporters and new friends joined in our urgent effort to find cures. While 

revenue from our golf invitational and other events represented the main 

portion of our income, non-event contributions grew exponentially this year. 

• Personal letter writing campaigns conducted by three families 

generated $111,000. 

• Business leader Jenny Craig announced she would donate proceeds of her new 

autobiography, The Jenny Craig Story: How One Woman Changes Millions of 

Lives, to our Foundation. One of the best known leaders in the field of weight 

management, Jenny developed a form of focal dystonia that affects 

her jaw muscles in 1995. 

Two highly creative efforts were launched by children 

• Twelve-year-old Nathan Spielberg developed red, “Love Life” wristbands to 

help his 9-year-old brother, Jacob, who has dystonia. Nathan first sold the 

bracelets to his schoolmates and in December we joined in to offer them for 

sale. In the month of December we raised $16,011. 

• Fifteen-year-old Lauren Von Der Ahe initiated a letter writing campaign 

about her sister Kristin’s struggle with dystonia and about the work of our 

Foundation. As a result, the campaign raised $25,603 in 2004 and the Tirage Art 

Gallery in Pasadena, California, donated $2,500 from their holiday art sale to us. 

Love Life Wristbands 

16 

Our appreciation goes to 

all those who bought Love 

Life wristbands this year. 

In a touching show of 

support 10,000 bracelets 

were sold in 2004. 

17 

12th Annual 

Golf Invitational 

Hedi Kravis Ruger 

Memorial Tournament 

Above: Janet Reno, 

Bonnie Strauss

Young Professionals Committee Summer Event 

Top: Susan Cohen, Ira Cohen, Richard Geller, Hillary Comora, Adam Comora, and Jennifer Geller 

Bottom (Young Professionals Committee co-chairs): 

Margaret A. Johnson, Andrew Olanow, Emily Fine 

18 

Your support has made a tangible difference; your 

continued involvement will enable us to make even 

greater inroads to help millions of patients and 

their families. 

In the area of organized special events… 

• Our 12th Annual pro-am golf invitational—The Hedi Kravis Ruger Memorial 

Tournament —beat all records of success. The event, co-chaired by Larry Fink, 

Nadine and Masa Kasuga, and Mark Standish, brought in $1.4 million to benefit 

dystonia and Parkinson’s disease. C. Warren Olanow, MD, FRCPC, Chairman 

of Mount Sinai Medical Center’s Estelle and Daniel Maggin Department of 

Neurology, was recognized for his work in the field of movement disorders 

and for his leadership as head of our Scientific Advisory Board. Former U.S. 

Attorney General Janet Reno was our keynote speaker. 

• Comedian Billy Crystal and his Broadway show 700 Sundays was a powerful 

draw to our fall theater benefit, which raised a record $120,000 in support 

of Parkinson’s disease research at New York’s Mount Sinai Medical Center. 

Our guests received copies of I Already Know I Love You, the children’s book 

written by Billy Crystal. Books were donated by the publisher HarperCollins. 

• Three outstanding Young Professionals co-chaired our committee in 2004, 

helping to build awareness and support, and having a good time in the process. 

Emily Fine, Margaret Johnson and Andrew Olanow gave it their all in 2004, 

generating $20,091 through winter and summer events that attracted new 

support and attention to our organization. 

Under the auspices of the Young Professionals Committee, Jeffrey M. Lederer 

was named recipient of the 2004 Scott M. Johnson Memorial Award for Dystonia 

& Parkinson’s Disease Research. A member of our Young Professionals (YP) 

Committee since its inception seven years ago, Jeff has consistently helped to 

get donations for YP events and has volunteered to work at our annual golf 

invitational. The award is given annually to the Young Professionals Committee 

member who has demonstrated tremendous enthusiasm and dedication 

in helping the Foundation raise funds and public awareness about these 

neuromuscular diseases. 

19

Financial Highlights 

The Bachmann-Strauss Dystonia & Parkinson Foundation was established in 

1995 to find better treatments and cures for the movement disorders—dystonia 

and Parkinson’s disease—and to provide medical and patient information. An 

independent, nonprofit, 501(c)3 organization, its funding is made possible 

through the generosity of individual and corporate contributors. 

Statement of Financial Position 

Assets 2004* 2003* 

Current Assets 

Cash and cash equivalents $ 112,609 $ 649,659 

Investment 2,540,892 1,678,850 

Prepaid expenses and miscellaneous receivables 24,686 45,603 

Total current assets 2,678,187 2,374,112 

Fixed assets, at cost, net of accumulated depreciation $ 9,139 $ 13,246 

Total fixed assets 9,139 13,246 

TOTAL ASSETS $ 2,687,326 $ 2,387,358 

Liabilities and Net assets 2004 2003 

Current liabilities 

Accounts Payable and accrued expenses $ 85,224 $ 78,414 

Total current liabilities 85,224 78,414 

Net Assets—Unrestricted 

Undesignated $ 1,827,102 $ 1,608,944 

Board Designated 775,000 700,000 

Total net assets—unrestricted 2,602,102 2,308,944 

TOTAL LIABILITIES AND NET ASSETS $ 2,687,326 $ 2,387,358 

*FOR THE YEAR ENDING DECEMBER 31 

Copies of our audited financial statements are available upon request by writing to The Bachmann-Strauss Dystonia & 

Parkinson Foundation, Inc., Mount Sinai Medical Center, One Gustave L. Levy Place, Box 1490, New York, NY 10029, or by 

email to Bachmann.Strauss@mssm.edu. 

20 

Statement of Activities 

Support and Revenue 2004* 2003* 

Fundraising Events 

Dystonia Invitational $ 1,630,330 $ 1,355,567 

Parkinson Theater Benefit 127,321 132,505 

Young Professionals Benefit 52,490 63,930 

Contributions $ 256,650 $ 186,841 

Think Tank $ 11,500 $ 71,974 

Investment Income $ 25,239 $ 36,263 

TOTAL REVENUE $ 2,103,530 $ 1,847,080 

Expenditures 2004 2003 

Program Services 

Research and Education $ 1,077,753 $ 1,142,920 

Supporting Services 

Fund raising Events $ 619,821 $ 523,952 

Operations /Administrative 112,798 47,589 

TOTAL EXPENSES $ 1,810,372 $ 1,714,461 

Change in net assets—unrestricted $ 293,158 $ 132,619 

Net Assets—unrestricted—beginning of year $ 2,308,944 $ 2,176,325 

Net assets (deficiency)—unrestricted—end of year $ 2,602,102 $ 2,308,944 

*FOR THE YEAR ENDING DECEMBER 31 

Think Tank 1% 

Contributions 12% 

Dystonia Invitational 78% 

Parkinson Theater 

Benefit 6% 

Young Professionals 

Benefit 3% 

21 

Research & Education 60% 

Fundraising 

Events 34% 

Operations & 

Administration 6%

MASAHIKO KASUGA 

P r e s i d e n t , G r e e n S t a m p A m e r i c a 

“ My involvement was first inspired by a dear friend 

living with dystonia. It has fuelled my commitment to do 

whatever I can to help educate others about this disease 

and to rally the kind of resources that will speed us 

down the path to a cure.” 

Generosity 

Our deep appreciation goes to the following individuals, foundations and 

companies that gave so generously to help further our work. 

Over $50,000 

Allergan 

Bonnie & Tom Strauss 

$25,000–$49,999 

BlackRock, Inc. 

Bloomberg 

Jenny & Sidney Craig 

Lucy & Mike Danziger 

Fran & Burtt Ehrlich 

Green Stamp America, Inc. 

Patrick O’Meara 

RBC Capital Markets Corporation 

Amy & James Regan 

Jo & Mark Standish 

$10,000–$24,999 

Angelo, Gordon & Co. 

Anonymous 

Archeus Capital Management, LLC 

Argent Financial 

Armor Holdings, Inc. 

The Private Bank of Bank of America 

Samantha & Jeffrey Berkowitz 

Arlene & Harvey Blau 

Jill Braufman & Dan Nir 

CB Richard Ellis 

Karen Cohen & Jack Hayflick 

Credit Suisse First Boston 

Cullman & Kravis, Inc. 

Marge & Dave Danna 

Peggy & Dick Danziger 

Judy & Lew Eisenberg 

23 

Endeavour Capital Advisors, Inc. 

Federated Department Stores 

Lori & Larry Fink 

GlaxoSmithKline 

Mary & Jay Goldberg 

Laurie & Peter Grauer 

Guggenheim Partners 

Jane Hartley & Ralph Schlosstein 

Hermes Advisors 

Holly & Doug Hirsch 

Winson Ho 

Barbara & Tom Israel 

Allison & Warren Kanders 

Kim & Loren Katzovitz 

Patti & Jeffrey Kenner 

Susie & Robert Klein 

Knight Vision Foundation 

Merrill Lynch 

Novartis Pharmaceuticals 

Nancy & Morris Offit 

Pfizer Inc. 

Purchase Estates 

Nancy & Bill Rackoff 

Ramius Capital Group, LLC 

Susan & Jon Rotenstreich 

Seward & Kissel LLP 

The Paul Singer Family Foundation 

Judy & Michael Steinhardt 

Jane & Jim Stern 

Leanne & Richard Tavoso 

Teva Neuroscience 

The Tisch Families 

Titan Legacy Management, LLC 

Diane & Tom Tuft

$5,000–$9,999 

Sue & Edward Wachenheim 

Weston Capital Management, LLC 

Jill & Matthew Zames 

AM Investment Partners, LLC 

Anonymous 

Ascent Media Network Services 

Dmitry Balyasny 

Nancy & Bob Blank 

Karen & Howard Clark 

Clinton Group, Inc. 

Kenneth Cole 

The Crown Family 

Jean & James Crystal 

Susan Cullman & John Kirby 

Ide & David Dangoor 

Michael Doyle 

Katherine Farley & Jerry Speyer 

Mary Susan & Don Fishman 

Susie & George Fugelsang 

Kathy & Richard Fuld, Jr. 

Gabelli Asset Management 

Alice & Nathan Gantcher 

Garban Intercapital Services 

Suzanne & Dean Hamilton 

Nicki & Ira Harris 

Stacy & Peter Hochfelder 

Israel Humanitarian Foundation 

Ann & Tom Johnson 

Jane & Christopher Johnson 

Patrice Kabram 

The Kaye Family Foundation 

Fran & Bill Klingenstein 

Lynne & Richard Leahy 

Lou Lebedin 

Traci & Mark Lerner 

Leucadia National Corporation 

Jeanie & Tom Loeb 

Leon Lowenstein Foundation, Inc. 

Leslie & Tom Maheras 

24 

Susan & Nick Maounis 

Lynn & Jack McAtee 

Sue & Gene Mercy 

MKP Capital Management, LLC 

Stephen Modzelewski 

Morgan Stanley 

The Mount Sinai Medical Center 

Josie & Kenneth Natori 

Nephila Capital Ltd. 

Dr. and Mrs. C. Warren Olanow 

Stephanie & Robert Pangia 

Pam & Ed Pantzer 

Prudential 

Putnam Lovell NBF 

Bonnie & Rick Reiss 

Margene & Edward Rubin 

Steven Schonfeld 

Nick Signoile 

Linda & Gregg Spielberg 

Farrel & Steven Starker 

Jennifer & David Stockman 

Sara & David Stone 

Leila & Melville Straus 

Ann & Andrew Tisch 

Jean & Ray Troubh 

United States–Japan Foundation 

Carolyn & Chris Von Der Ahe 

The Vranos Family Foundation 

Mark Zames 

$2,500–$4,999 

Anonymous (2) 

Hilary Baloon & Orin Kramer 

Basswood Capital Management, LLC 

Suzanne & Jeff Bloomberg 

Enid & Leonard Boxer 

Dr. Susan & David Bressman 

Tom Brock 

Ellen & Mike Brown 

Jennie & Richard DeScherer 

Nancy & Ed Dunst 

Samuel Elkind 

Nancy & Robert Englander 

Joel Friedman 

George Weiss Associates, Inc. 

Richard Gilder 

Susan & Donald Ginsberg 

Jackie & Barry Gosin 

Kenneth Griffin 

Iain Henderson Russell 

Betty & Rodger Hess 

Hilliard Farber & Co., Inc. 

Barbara & Gedale Horowitz 

Ellen & Howard Katz 

Gloria & Rich Kushel 

Sheila Labrecque 

Laura Landro & Richard Salomon 

Susan Leader 

Drs. Sarah & Marty Leibowitz 

Betty & John Levin 

Nadine & Peter Levy 

Jean & Armand Lindenbaum 

Linda & Ron Mandle 

Gabrielle Napolitano 

The Nash Family Foundation 

Peter G. Peterson 

Abby & Reid Ruttenberg 

Ellen & David Stein 

Felicia & Greg Taubin 

Nancy & Bill Thompson 

Jean Tordella & Ed Bennett 

Ken Tropin 

Mary Wallach 

Nancy & David Weeks 

Karen & Jon Zames 

$1,000–$2,499 

Ginny & Roger Aaron 

Abernathy MacGregor Group, Inc. 

Aderis Pharmaceuticals 

25 

Alexander P. Adair 

Eleanor Alger 

Anonymous 

Aspen Advisors LLC 

Lauren & Steve Beck 

Susan & Mark Beckerman 

Jami Beere 

Sally & Miles Berger 

Judy & Howard Berkowitz 

Violaine & John Bernbach 

Bertek Phamaceuticals 

John Binnie 

Susan & John Boken 

Amy Leeds-Brag & Anders Brag 

Deborah De Leon Brin, MS & 

Mitchell Brin, MD 

Tina & Bill Brown 

Carole & Dan Burack 

Bob Cahill 

Campbell Family Foundation 

Lauren Cantor 

Canyon Capital Advisors, LLC 

Edward Lee Cave 

CHANEL, INC. 

Jacky & Jeffrey Clyman 

Brooke & Peter Cohen 

Toby & Leon Cooperman 

Crane Co. 

Carol & George Crapple 

Louise & Edgar Cullman 

Davidson Kempner Capital 

Management LLC 

Mr. & Mrs. Richard Debs 

Ronald Del Mauro 

Kenneth DeRegt 

Kathy Doyle 

Gio & Ted Dunn 

Dystonia Medical Research Foundation 

Anne & Joel Ehrenkranz 

Nancy & Henry Elghanayar 

Caryl & Israel Englander

$1,000–$2,499 (continued) 

Sara & Charles Fabrikant 

Mindy & Mark Field 

Emily Fine & Mitchell Nadler 

Julie Finley 

Arlene & Bob Fischer 

Melanie & Jeff Fox 

Karen & David Freedberg 

Hugh Freund 

Nancy & Tom Garson 

Nisa Geller & Jeff Tannenbaum 

Mr. and Mrs. Andy Gladstein 

Ellen Goldfarb 

Joy & Harry Goldstein 

Ruth & Sandy Gottesman 

Harry Gradman 

Iris & Martin Gradman 

Catherine & Robert Grillo 

Grūss & Co. 

Paula & Jeff Gural 

Susan & John Gutfreund 

Colleen & Pat Haskell 

Susie Hermanson 

Marlene Hess & Jim Zirin 

Walter W. Hess, Elsmere 

Foundation, Inc. 

Barbara & Steve Heyman 

Gerry & Bob Hodes 

Alexis & Tom Jasper 

Margaret Johnson & Richard Wager 

Sandra & David Joys 

Thomas L. Kempner 

Deborah & James Kern 

Fran & Ed Kittredge 

Beth & Richard Klein 

Sharon & Fred Klingenstein 

Sarah Knapp & Zac Smith 

Korenvaes Capital Management LP 

Cheryl & Charles Kozloff 

Robert Kravis 

26 

Deborah & Peter Krulewitch 

Linda & Ben Lambert 

Carol & Mark Lederman 

James Lee 

Karen & Richard LeFrak 

Audrey & Henry Levin 

Marita & Seymour Lichtenstein 

David Liebowitz 

Jennifer & Marc Lipschultz 

Jeanette & Peter* Loeb 

Ninah & Michael Lynne 

Dudley & John Macfarlane 

Barbara Mantel & Frank Rango 

Karen & Steven Margol 

Marie & James Marlas 

Shari & Jim Massey 

Martello Investment Management 

Lynn & Sean Mattingly 

Leni & Peter May 

Bill McIntosh 

Medtronic Neurological 

Robert Meister 

Victoria & Louis Mele 

Andrew Merson 

Elissa & Mitchell Mertz 

Barbara & Henry Miller 

Miller MotorCars 

Stacey & Eric Mindich 

Phyllis & Stuart Moldaw 

Morgan Joseph & Co. 

The Mount Sinai Medical Center, 

Radiology Associates 

Roy R. Neuberger 

The New York Mets Foundation, Inc. 

Karin & Brian Nutt 

Andrew Olanow 

Robin & Glenn Parker 

Judy Peck 

Perry Capital, LLC 

Amy & William Peter 

Tracy Pollan & Michael J. Fox 

Laura & John Pomerantz 

Poten & Partners 

Mr. & Mrs. Dale Precoda 

Rawlco Capital Ltd. 

Clifton Robbins 

Hinda Rosenthal & 

Dr. Bernard Rosenberg 

Joan & Alan Safir 

Hilary & Sam Sallerson 

Herbert Sambol 

Janice & Dick Sambol 

Denise & Andrew Saul 

Larry Scheinfeld 

Alison & Jack Schneider 

Peggy & Wolf Schoellkopf 

Kimberly Kravis Schulhof & 

Jonathan Schulhof 

Paola & Mickey Schulhof 

Carol & Harvey Schulweis 

Christine & Steve Schwarzman 

Marc Shafir 

Rabbi & Mrs. Barton Shallat 

Steve Shapiro 

William J. Shupper Family Foundation 

Miles Slater 

Joan & Joel Smilow 

Judy & Timothy Smith 

Sydell & Ira Smith 

William S. Smith 

Emily & Jerry Spiegel 

Sidney & Morgan Stark 

Joanne & Joseph Stein 

Donna & Lawrence Steinberg 

Sallie & Edwin Stern 

Julie & Peter Strauss 

Thelma & Andy Strauss 

Vivian & Charles Sukenik 

Marge & Lou Susman 

Lynne & Mickey Tarnopol 

Titan Pharmaceuticals, Inc. 

27 

Brad Tolkin 

Jeff Tolkin 

Susan Unterberg 

Debra Van Der Heyden & 

Scott Panzer 

Penny & Jeff Vinik 

Eleanor Von Der Ahe 

Wil Von Der Ahe 

Claudia & Billy Walters 

Margee & Bruce Warwick 

Susie & Bruce Waterfall 

Jane & Phil Waterman 

Sue Ann & John Weinberg 

Nancy & Paul Weiser 

Adam Weisman 

Caren & Roger Weiss 

Brigette & Jon Wickers 

The Wilf Family 

Sue Ann & George Williamson 

Bobbie & Michael Wilsey 

Herbert S. Winokur, Jr. 

Helen & Nathaniel Wisch 

Fred B. & Opal S. Woosley Foundation 

Carol & Lawrence Zicklin 

Audrey & Richard Zinman 

*Deceased 

$500–$999 

ACAE, LLC 

Jane Ackerman 

Margie & Larry Altschuler 

Andreeff Equity Advisors, LLC 

Gillian Attfield 

Rhonie Berlinger 

Ilise & Steve Bernstein 

Betsy’s Things Sportswear, Inc. 

Vineer Bhansali 

Peter Bijur 

Annette & Stanley Blaugrund 

Adele & Leonard Block

$500–$999 (continued) 

Janice & Bruce Brittain 

Jean & Peter Bronstein 

Melissa & Tim Cahill 

Susan & Gary Clemons 

Sharleen Cooper Cohen & 

Martin Cohen 

Joan & Jack Courtmanche 

Marylyn & Richard Crystal 

Scott Daniels 

Nancy & Richard Davis 

Lucy & Nat Day 

Marc Dolfman 

Nancy & Bob Downey 

Caryn & Craig Effron 

Barbara & Norman Eig 

Louise & Jerome Falk 

Olivia & John Farr 

Amy & Eric Federman 

Leslie & Gregg Fox 

Kim & Stuart Frankenthal 

Margot & Norman Freedman 

Tamara & Lynn Fritz 

George Little Management Inc. 

Adelma & Hazard Gillespie 

Karen Ginsberg & Bruce Greenwald 

Sylvia & Steve Glassman 

Bernard Gradman 

Fran & Larry Gradman 

Louise & Henry Grunwald 

Patricia & Ed Gutman 

Hatteras Press, Inc. 

Anne & John Herrmann 

Norma Hess 

Tom Hess 

Ronnie & Sam Heyman 

Micki & Steve Hirsch 

Rochelle & David Hirsch 

Ruthanne & Jim Iselin 

Ivy Asset Management Corporation 

28 

Sherry Jacobson & Eugene Zuriff 

Sachin Jhangrani 

Rory & David Jones 

Hal Kamine 

Rochelle & Barry Kaplan 

Ted Kaplan 

Elaine & Henry Kaufman 

The Kohn-Joseloff Foundation 

Gail Kreitman 

Donna & Jeffrey Laikind 

Lindsey & Bruno LaRocca 

The Leonard & Evelyn Lauder 

Foundation 

Lauri Lazarus & Andy Strober 

Andrew Lerner 

The Samuel Lyon Charitable Trust 

Barbara & Bernard Mars 

Margie & Edgar Masinter 

Frank McCullough 

Janice & Robert McGlashan 

Meri Miller 

Charles Moore 

Ellen & Marc Mosier 

Charlotte Moss & Barry Friedberg 

New York City Ballet 

Ann & Woody Northup 

Nancy & Harold Oelbaum 

Colleen & Timothy O’Hara 

Mike O’Leary 

Paula & William Oppenheim 

Stacy & Josh Orenstein 

June & Irving Paler 

Samuel Pryor 

Maizie & James Pusich 

Jill & Mark Rachesky Charitable 

Foundation 

Christopher Ragucci 

Jane & Paul Rittmaster 

Patricia & Ronald Rose 

Cindy & Scott Roskind 

Connie & Art Rosner 

Thomas Russo 

Joyce & Reid Samuelson 

Pamela & Arthur Sanders 

Lowell M. Schulman 

Nancy & Marc Shrier 

Alice Shure 

Janet Silverman 

Gerri & Dan Soba 

Eileen Solomon 

Diane & Joe Spano 

Ginny & Steven Spiegel 

Joan & Michael Steinberg 

Kathy Steinberg 

Andrea & Robert Stoler 

Mary & Bill Stone 

Carlyn & Robert Stonehill 

Jane & Peter Strasser 

Marlene & Harold Strauss 

Jane & Rob Stricker 

Nicki & Harold Tanner 

Tracy & Keith Tobias 

Celeste & Thomas Von Der Ahe 

Jan & Lew Warshauer 

Suzanne & Steve Weiss 

Trina & Fred Whitridge 

Harriette Winner 

Hiroyuki Yamaga 

Edward Yorke 

Daniel Ziff 

Barbara & Mike Zimmerman 

$250–$499 

Donna & Alan Altschuler 

Patricia & John Anderson 

Kimberly & Brian Arial 

Brenda Ballin 

Sylvia Barsion 

Gladys & Lewis Bass 

Vinton & Greg Bauer 

Ronnie & Peter Benson 

29 

Joan & Robert Bernhard 

Wendy & Mark Biderman 

Monica & Stephen Bigmore 

Jaclyn & David Blatte 

Allison & Robert Blinken 

Christopher Brody 

Mary Byrna Sanger & Harry Katz 

Jason Canter 

Congregation Emanu-El 

The Conklin Corporation 

The Continental Travel Group 

Lisa & Sean Dany 

Madeline & Charlie Dreifus 

Lester Edelstein 

Entergy Services, Inc. 

Sue & Stuart Feld 

Anita & Gil Fields 

Dan Flynn 

Diane & Blaine Fogg 

Susan & Dan Garnic 

William Givhan 

Katherine & Clifford Goldsmith 

Sydnee Gordon 

Joan Granlund 

Rhonda Greenwald 

Liz Hampton 

Susan & Robert Hermanos 

Dana & Mike Hokin 

Houston Community Service Club 

Colleen Hulce 

Fern Hurst 

Penni & Alistair Johnston 

Kari Jones-Sabin 

Linda & Jerry Kahn 

Brooke Kaplan 

James L. Kerr 

Edith & Paul Kolton 

Bob Lawrence 

Nina & Tom Lawson 

Kathy & William Lee


Marci & Glenn Levine 

Rebecca & Marcel Margulies 

Priscilla & George Matouk 

Andrea & Tim McCarthy 

Ruth Mendlowitz 

Sandra & Don Middleberg 

Rona & Sidney Miller 

Vicki & Fred Modell 

Crystal Moore 

Cindy & Brian Morris 

Doreen & Ben Mosier 

Nina & David Mosier 

Ben Moyer 

Laura Nova 

Stefanie Steel Obenzinger 

Rita O’Connor 

Gail & Mark Oppenheimer 

Norma & Jerry Perlman 

Matthew Plaveczky 

Colleen & Ken Rand 

Mariette Reed 

Lisa & John Ripley 

Shari & Gerry Ritterman 

Ina Sue & Stuart Ross 

Cynthia & Gerry Rothstein 

Susan & Philip Ruth 

Susie Sapirstein 

Annelle & Richard Savitt 

Linda & Richard Schapiro 

Col. & Mrs. Otto Schulz 

Hussein Shahine 

Linda & David Sicher 

Michael Smith 

Pam & Brook Smith 

Richard Solomon 

Susan & Peter Solomon 

Alec & Carole Spielberg 

Jamey & Jeff Spielberg 

Dorothy & Harry Stern 

30 

Stephanie Stiefel & Bob Cohen 

Susan & Jeffrey Sussman 

George Sykes 

Sue & Bob Tofel 

Sharon & Jonas Weiner 

Katherine Whitbeck 

Hon. Christine & John Whitman 

Sheila & Allen Wolkow 

Elizabeth & Philip Young 

Kayla & Ira Zames 

Sylvia & Ray Zirnheld 

$100–$249 

Lee Allison 

The Ashford Family Trust 

Atlas Associates LLC 

John Avlon 

Felice Axelrod 

Susan & Robert Baggott 

Dimitri Balamotis 

Dana & Itai Baron 

Judith Bay 

William Benovitz 

Dorothy Berelson 

Carole & David Bernstein 

Delphine Betka & Tori Warren Ohlson 

Andrew Black 

Lisa Borowitz 

Robert Bose 

Tracy & David Bowlby 

Marion & William Brakebill 

Mark Brashear & Jim Shreve 

Meredith Anne Brill 

Paula & Britt Brockman 

Cynthia Brodsky 

Katy Brodsky 

Elizabeth Bronsteen 

Karl Brown 

Susan Buchanan 

Jillian Buhler 

Barbara & Don Burch 

William Burgemeister 

Elizabeth & Eric Butler 

Drs. Kim & Guy Caldwell 

Beate Carriere 

Aimee Carroll 

Wanda & Bernie Cecil 

Mr. & Mrs. Aaron Chase 

Song Cho & David Klein 

Danalee Christensen 

Bernard Clougherty 

Karen & Bruce Cohen 

Shari & Corey Cohen 

Susan Cohen 

Julie & Brad Coleman 

Hillary & Adam Comora 

Nanci & Tom Conforti 

Anthony Coppers 

Lynn & Leo Corbett 

Maria & Eric Costa 

Florence Covitz 

Hillary Cuccia 

Mary & Michael Cullen 

Dillard Cunningham 

Jamie Cyms 

Barbara Dancy & Paul Dreibelbis 

Gary Darnell 

Ralph Davidson 

Pam & Jon Davis 

Fran & David Dick 

Dixie Specialty Co., Inc. 

Janet & Phillip Douglas 

Laura DuFour 

Anne-Marie Duncan 

Kevin Dupont 

Julie Ehrlich 

Shirley & Edmund Eller 

Christopher Engel 

Judith & Robert Ennis 

Jillian Fascitelli 

31 

Peter Feld 

Susie & Joel Fink 

Arthur Fischer 

Shari & Tom Fish 

Laurie & Andrew Fishman 

Judy & David Fivel 

Almerinda Forte 

Anna Forte 

Connie & Jim Fox 

Rickardo Francis 

Michelle Fredricks 

Elissa Freedberg 

Donna Gasaway 

Jennifer & Richard Geller 

Irving Gerstman 

Grace & James Giesel 

David Glanstein 

Barbara & Edwin Goldberg 

Linda & Stuart Goldberg 

Mitchell Golden 

Peter Goldman 

Steven Goldstein 

Joyce & Alfred Goodman 

Shaun Gordon 

Jeanne & Cleve Goring 

Susan & Jeff Gourdji 

Clarice Gradman Fishman 

Roy Gurny 

Lisa & Sang Han 

Helen Handy 

Joan Brady Hannah & David Hannah 

Laura & Thomas Harrington 

Stacey & Eric Harter 

Heidi & Graham Hausler 

Caroline & Dermot Hayes 

Linda & Robert Heath 

Jody & George Hegarty 

Marilynne Herbert 

Joseph Hertzberg 

Leslie & Larry Hillel


Julie & Ken Hoffman 

Rhonda & Brad Holsworth 

Andrea & Bruce Holzband 

Rachael Hope 

Julia & Victor Huang 

Lauren Hufnal 

Ali Jeffery 

Stephanie & Stanton Joe 

Danai & Suthida Kanchanagom 

Cheryl & David Karp 

Mary Grace & Peter Kaufman 

Carl Kempner 

Seth Keslow 

Linda & George Kessler 

Dayna & Brett Klein 

Debbie & Steve Klineman 

Sharman & Andrew Knox 

Jill & Peter Kraus 

Nanci & Steve Kraus 

Lauren Kreuter 

Ellen Krupa 

Linda & Angleo La Bruna 

Jeffrey Lederer 

Fran & Richard Lehman 

Pam & Arnold Lehman 

Roger Lehman 

Morton Lembeck 

Arnie Levin 

Sonia & Ronnie Levine 

Leslie & James Levy 

Deborah Lieberman 

Richard Lieberman 

Jean Little 

Mareka & Michael Lodge 

Arthur Loeb 

Robert Lowenthal 

Dorothy Ludmer 

Carole & Carl Lutnick 

Teryl & Derek MacDougall 

32 

Jessica Marenda 

Alissa Mark & Scott Levin 

Pamela & J.C. Massar 

Abigail May 

Jean & Ben McCleary 

Victoria & Kerry McCluggage 

Mr. & Mrs. Leonard McGuirk 

Julian & Kenneth McKenna 

Marilyn Melton 

Irene Mendon 

Gary Menkes 

Megan Meyer 

Jennifer & David Millstone 

Annie & Mark Mitchell 

Shary Moalemzadeh 

Nazee & Joseph Moinian 

David Moody 

Nina Moore 

Hugo Muzza 

Barbara & Greg Nefouse 

Tara & Jim Neumann 

Jennifer & Tim Newcomer 

David Nikodem 

Carol & Howard O’Koon 

Sarah & Chuck O’Koon 

Stacey & Kevin O’Koon 

Edward Olanow 

Andrea Oleksyn 

Barbara & Chuck Osburn 

Heather Patt 

Debbie & David Perellis 

Alex Perez 

Bimla & Christian Picot 

Mark Polansky 

Neil Pomper 

Pammie & Bill Post 

Kathryn Prael 

Cindy Rupp Rand & Erik Rand 

Carmela Rea 

Jane & Dan Rechter 

Susan Regis & Lennart Floren 

Fran & Art Reiner 

Eileen & Harry Renco 

Jennifer Riello 

Irina Rivkind 

Lynn Roddy 

Leonard Rosenberg 

George Ross 

Marcia & Bruce Roth 

Ellen & Harold Rubin 

Noga & Devon Ruttenberg 

Mary Ann & Klaus Saegebarth 

Nancy & Nick Saggese 

Stan Sandberg 

Philip Sassower 

Julie & Steve Scheinthal 

Denise Schiller 

Margie & Rick Schneidman 

Linda & David Schuster 

Elizabeth Schwarzman 

Susan Scultore 

Jerry Seslowe 

Stacy & David Shane 

Judy & Harry Shapira 

Julia Shaull & Timothy McQuay 

Rhett Silver 

Carrie Simon 

Amy & Andrew Small 

Anne & Gary Smith 

Margaret & Kennard Smith 

Barbara & Si Sokol 

Jackie & Robert Solinger 

Jeffrey Sonking 

Jason Spacek 

Connie Kupka-Speltz & David Speltz 

Joan Steinman 

Julia Stewart 

Elizabeth Strauss & Mark Clyman 

Lorraine & Steven Strauss 

Mike Sucher 

33 

Richard Swersky 

The Temple Gift Shop 

The Temple 

Mary Nally Ternan & Edward Ternan 

Sharon & John Thompson 

Victoria Thompson 

Jeremy Tilsner 

Candace Tischer 

Mr. & Mrs. Steve Trager 

Georgina & John Traut 

Steven Trepp 

Kathleen & Tim Von Der Ahe 

Jacqueline & Frank Walley 

Peter & Dale Wang 

Terry & Jeffrey Weis 

Melissa Weiser 

Rachel & Gregory Weiss 

Dawn & Cary Welsh 

David Werblowsky 

Danna & Kenneth Whittenburg 

Deborah & Steven Wilensky 

Anne Winner 

Kelly & Timothy Worstell 

Merilynn Yamada 

Feta Zabeli 

Carol & Arnold Zegart 

We apologize for omitting Mrs. 

Catherine Cahill and Mr. William 

Bernhard from our donor’s list in 

our 2003 annual report. Their 

support is much appreciated; 

the oversight was inadvertent.

MARGARET A. JOHNSON 

Y o u n g P r o f e s s i o n a l s C o m m i t t e e m e m b e r 

“ I really enjoy working with the people I’ve met on the 

Young Professionals Committee. We throw great parties 

and that helps fund important medical research. At the 

end of the day, that makes me feel good.” 

Young Professionals— 

Contributors 

Eric Adolfsen 

Lee Allison 

Anonymous 

Pierce Archer 

Trevor Atkinson 

John Avlon 

Dimitri Balamotis 

Katie Bannon 

Melissa Benton 

Andrew Black 

Meredith Anne Brill 

Alex Brodsky 

Katy Brodsky 

Christopher Brody 

Elizabeth Bronsteen 

Susan Buchanan 

Jillian Buhler 

Elizabeth & Eric Butler 

Christina Buzantian 

Laura Byerson 

Kristen Campolattaro 

Jason Canter 

John Capano 

Aimee Carroll 

Dalia Cohen 

Susan Cohen 

Valerie Colas 

Hillary & Adam Comora 

Anthony Coppers 

Maria & Eric Costa 

Kelly Coyle 

Hillary Cuccia 

Jamie Cyms 

Diane Daltner 

Jaime Danza 

Ralph Davidson 

Pam & Jon Davis 

Bianca Delia 

35 

Robin DeMarco 

Sai Devabhaktuni 

Corrin Drowica 

Laura DuFour 

Anne-Marie Duncan 

Paul Durose 

Julie Ehrlich 

Wilma Epstein 

Harlan Fabrikant 

Tariq Fancy 

Alain Farrelly 

Jillian Fascitelli 

Jonathan Fascitelli 

Peter Feld 

Steve Feldman 

Sabrina Strickland Fertig & 

Richard Fertig 

Emily Fine & Mitchell Nadler 

Andrew Fleiss 

Dan Flynn 

Mark Foresi 

Almerinda Forte 

Anna Forte 

Rickardo Francis 

Ewa Franczak 

Elissa Freedberg 


Stephen Geller 

Hannah Gersen 


Molly & Brett Goldberg 

Mitchell Golden 

Steven Goldstein 

Jason Golush 

Shaun Gordon 

Keri & Richard Gorsky 

Roy Gurny 

Alex Gushin

Young Professionals— 

Contributors (continued) 

Dina Hanna 

Hope Harris & Charles Foster 

Mary Hastings 

Jody & George Hegarty 

Maura Hegarty 

Bridget Herman 

Tyler Herrald 

Tom Hess 

Cecilia & Scott Hirshorn 

Rachael Hope 

Lauren Hufnal 

Monica Ihnatowicz 

Ali Jeffery 

Lanna Joffrey 

Margaret Johnson & 

Richard Wager 

Kristin Kahle 

Brooke Kaplan 

Seth Keslow 

Shayna Kessler 

Susheila Khachane 

Tony Kilani 

Dayna & Brett Klein 

Sarah Knapp & Zac Smith 

Allison Konick 

Deborah Kravetz 

Lauren Kreuter 

Josh Kulkin 

Rose Kwass 

Julie Lawinski 

Jeffrey Lederer 

Deborah Lieberman 

Richard Lieberman 

Jennifer & Marc Lipschultz 

Brendan Maher 

Jessica Marenda 

Alissa Mark & Scott Levine 

Abigail May 

36 

Ellen McCann 

Devon McKee 

Julian & Kenneth McKenna 

Kelly McManus 

Cathie Melchionna 

Gary Menkes 

Frank Metzke 

Damon Meyer 

Megan Meyer 

Jennifer & David Millstone 

Calvin Mitchell 

Shary Moalemzadeh 

Alidad Moghaddam 

Crystal Moore 

Nina Moore 

Teri Murray 

Hugo Muzza 

Tara & Jim Neumann 

Philippa Newman 

David Nikodem 

Laura Nova 

Jason Obolsky 

Andrew Olanow 

Edward Olanow 

Andrea Oleksyn 

Fran & Edward Opengart 

Tyra Orange 

Dennis Palmeri 

Robin & Glenn Parker 

Patricia & Hiren Patel 

Heather Patt 

Jason Paul 

Alex Perez 

Matthew Plaveczky 

Mark Polansky 

Kathryn Prael 

Christopher Ragucci 

Mark Rapela 

Carmela Rea 

Michael Remey 

Jennifer Riello 

Irina Rivkind 

Celia Rogge 

Mark Rosenberg 

Cindy & Scott Roskind 

George Ross 

Dana Rubinstein 

Cheryl Russo 

Noga & Devon Ruttenberg 

Michael Sala 

Stan Sandberg 

Philip Sassower 

Lauren Schissler 

Elizabeth Schwarzman 

Susan Scultore 

Lauren Sena 

Nevine Shahine 

Fabiola & Jamil Sheppard 

Rhett Silver 

Janet Silverman 

Carrie Simon 

Doug Smith 

Tara Southard 

Mark Stehli 

Elizabeth Strauss & 

Mark Clyman 

Julie & Peter Strauss 

Tracey Strauss 

Elizabeth Strouthides 

Richard Swersky 


Gerry Tavolato 

Victoria Thompson 

Jeremy Tilsner 

Candace Tischer 

Lucy Toquica 

Steven Trepp 

Sam Vaill 

Michele Varvaro 

Martial Vivot 

37 

Tanesia Walters 

George Ward 

Kendyl Washer 

Melissa Weiser 

Rachel & Gregory Weiss 

Wendie Weisser 

David Werblowsky 

Stacey Wheeler 

Shondelle Wills 

Erin Wilson 

Matthew Winters 

Sheila & Allen Wolkow 

Alexis Young 

Feta Zabeli 

In-Kind Contributions 

Alixandre Furs Inc. 

Josh Altman 

Ark Restaurants 

Atlantic Wine & Spirits 

Avirex 

Chris Barrett 

Jami Beere 

Black Book Media Corp. 

Arlene & Harvey Blau 

Bloomberg 

Suzanne & Jeffrey Bloomberg 

Bombay Sapphire 

Michael Breed 

Brooklyn Brewery 

David Burke 

Cartier 

Casa Tres Vidas 

Le Charlot 

Charmer Industries 

Christian Dior Perfumes 

Susan Cocchiano 

Coco Pazzo 

The Continental Travel Group

In-Kind Contributions 

(continued) 

Carole Cousin 

Billy Crystal 

Robert Danes 

Jay Davis 

Dow Jones Newswires 

Duke’s Restaurants 

ECAD Consulting, Inc. 

Elizabeth Arden Red Door Salon & 

Spa at Saks Fifth Avenue 

R. Esmerian, Inc. 

Estée Lauder 

Equinox Fitness Club 

European Hair Design 

James Fine 

Four Seasons Resort Great Exuma 

at Emerald Bay 

Four Seasons Resort at Punta Mita 

The Four Seasons Restaurant 

Frédéric Fekkai 

Fresh 

Fresh Direct 

Thomas Friedman 

Susie & George Fugelsang 

La Gaïac 


Giorgio Armani 


Glorious Food 

Elaine & Michael Goldstein 

Marsha Lynn Gordon, MD 

Gotham Foods, Inc. 

Laurie & Peter Grauer 

Greenbeads, LLC 

Hampton Retreats 

Hatteras Press, Inc. 

Barbara & Dale Horowitz 

Hotel Le Toiny 

Ali Jeffery 

Jenny Craig, Inc. 

Johnnie Walker 

Margaret Johnson & 

Richard Wager 

Warren Kanders 

Susan Karp 

Masa Kasuga 

Ellen & Howard Katz 

Kimara Ahnert 

Jeff Lederer 

Lehman Brothers 

Longchamp USA 

L’Oreal 

Brendan Maher 

Maurice Villency 

Lynn & Jack McAtee 

Susan Melnick 

Metamorphosis Day Spa 

Michael C. Fina 

Vito Milano 

Allison Mondel 

J. Todd Morley 

Josie & Kenneth Natori 

NETJETS ® 

NBA 

The Neuwirth Company, Inc. 

New York City Ballet 

James G. Niven 

Northwest Airlines 

Laura Nova 

Old World Marketplace 

Margaret Parrish 

Park Avenue Liquor Shop 

Paul Labrecque Salon 

Debbie & Robert Picard 

Professional Travel Associates 

RBC Capital Markets Corporation 

Amy & Jay Regan 

Relais & Chateaux 

Repêchage 

Kyle Ridaught 

The Roth Family 

Rustico Cooking 

La Samanna 

Herbert Sambol 

Giovanna Sanfillipo 

Scott J. Salon & Spa 

Mary & Frank Skillern 

SkinKlinic 

Morgan Stark 

Sara & David Stone 

Bonnie & Tom Strauss 

Tracey Strauss 

Eileen & Peter Sudler 

Swarovski 


Thomas Morrissey Salon 

Travel & Leisure 

Trish McEvoy 

West Glen Communications, Inc. 

Todd Wider, MD 

Hana & Robert Wolf 

Villas in Vallarta, LLC 

Eli Zabar 

Zabriskie Gallery 

Nina & Tim Zagat 

Eugene Zuriff 

38 39

O n t h e c o v e r : 

From Kathy Grater’s perspective, her 15-year-old son Mike has 

the most positive attitude of anyone she knows and that, she 

says, is what gets him through life. They’ve had a rough time 

of it. Mike was born with a metabolic defect that has resulted 

in dystonia and loss of control of his legs. After undergoing 

Deep Brain Stimulation (DBS) surgery last year, his walking is 

improved and he has more control over his legs.

Co-Founders 

Louis Bachmann (1916-2000) 

Bonnie Strauss 

Board of Directors* 

Bonnie Strauss 

President 

Thomas W. Strauss 

Vice President and Treasurer 

Nancy L. Rackoff, Esq. 

Secretary 

Herbert Black 

Mitchell F. Brin, MD 

Frederick M. Danziger, Esq. 

Judith Ann Eisenberg 

George N. Fugelsang 

Warren B. Kanders 

Loren M. Katzovitz 

Thomas G. Loeb 


Jon W. Rotenstreich 

Gregg Spielberg 

Chris Von Der Ahe 

Jonathan D. Zames 

Scientific Advisory Board* 


Chairman 

Mahlon R. DeLong, DMRF Liaison 

ex-officio 

M. Flint Beal, MD 

Mitchell F. Brin, MD 

David R. Colman, PhD 

George N. DeMartino, PhD 

Robert J. Desnick, MD, PhD 

John A. Hardy, PhD 

Joseph Jankovic, MD 

John H. Morrison, PhD 

José A. Obeso, MD 

Anthony H.V. Schapira, 

DSc, MD, FRCP 

Executive Director 

Helen H. Miller 

*2004

The Bachmann-Strauss 

Dystonia & Parkinson Foundation, Inc. 

Mount Sinai Medical Center 

One Gustave L. Levy Place 

Box 1490, New York, NY 10029 

T: 212.241.5614 

F: 212.987.0662 

www.dystonia-parkinsons.org 

The Bachmann-Strauss Dystonia & Parkinson 

Foundation was established in 1995 to find 

better treatments and cures for the movement 

disorders dystonia and Parkinson’s disease, and 

to provide medical and patient information. An 

independent, nonprofit, 501(c)3 organization, its 

funding is made possible through the generosity 

of individual and corporate contributors. 

Photos by Ben Asen. 

The design and printing of this annual report were 

generously donated by Bloomberg.

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