WELCOME TO COLUMBUS Serving BEB/Meige

Serving
BEB/Meige and
related disorders
MISSION:
Research to Cure • Support to Care • Education to Enlighten
VOLUME 31 • NUMBER 2 • MARCH/APRIL 2012
2012 BEBRF SYMPOSIUM IN COLUMBUS, OHIO
John A. Burns, MD, Program Director
Blepharospasm,
Meige, hemifacial
spasm and apraxia
of lid opening
patients, welcome
back to Columbus,
Ohio. On August
18, 2012 it will be
the third BEBRF
meeting held in
Ohio's capItal city. We are planning to
make it the best meeting yet.
The meeting will be held on the campus
of the Ohio State University at the Fawcett
Center for Tomorrow. It is a wonderful
building with a large auditorium, great
audio visual equipment and free surface
parking just outside the main entrance. It
also has a very comfortable dinning room
for our light breakfast and lunch that will
be provided free by our sponsor. The facility
is located at 2400 Olentangy River Road,
Columbus, OH 43210. It is just 3 minutes
off freeway State Route 315.
The educational program will feature
eight speakers with more than 125 years
of combined experience in the
management of facial dystonias. Of special
note will be Ali Rezai, MD and his lecture
on the management of movement
disorders with deep brain stimulation.
Charles Sopakar, MD, PhD will be speaking
on the use of Zytaze and it's potential to
improve the control of facial spasms when
combined with a toxin therapy.
For those of you planning to stay
overnight, a block of rooms has been
reserved at the special price of $128.41
(tax included, use code BEB) at the
Holiday Inn Express, Columbus University
Area, 3045 Olentangy River Road,
Columbus, OH 43202. The hotel is
located five minutes from the Fawcett
Center and the hotel will provide a free
shuttle service to and from the meeting.
A room can be reserved by calling (614)
447-1212. Please mention you are
attending the BEBRF meeting to get the
WELCOME TO COLUMBUS
Anita T. Croce, North-Central District Director
Dr. John A. Burns will host the 2012
BEBRF Symposium held this year on
Saturday, August 18 at the Fawcett
Center on the grounds of The Ohio
State University in Columbus, Ohio. The
Symposium will start at 8:30 a.m. with
registration and a continental
breakfast. A box lunch will follow at
midday. For those who are planning to
attend, please see page five for
registration information. All physicians, patients and guests
are invited to attend this informative gathering which will
special rate.
Multiple pharmaceutical firms will be at
the meeting to explain the advantages of
their toxins and dry eye products. See you
in Columbus, Ohio on August 18, 2012. It's
a wonderful opportunity to become better
informed about your dystonia and share
experiences with your fellow patients. And
remember the best thing about the
meeting is that it is FREE!!
RARE DISEASE DAY
“Rare, but strong together”
The purpose of Rare Disease Day is to focus attention on
the needs of patients and families affected by rare
diseases. “This is a global observance,” said Peter L.
Saltonstall, President and CEO of the National Organization
of Rare Diseases (NORD). “Individuals and organizations
around the world will all be sharing stories of how rare
disease affects their lives. The challenges of living with a
rare disease, (like blepharospasm and Meige), are:
•
•
•
•
•
•
Difficulty getting a timely, accurate diagnosis.
Too little research.
Too few treatments.
Reimbursement or other affecting access to treatments.
A sense of isolation.
Difficulty finding medical experts.”
focus on
treatment
Remember that you are not alone.
options of
blepharospasm,
Meige, hemifacial spasm and apraxia of eyelid opening.
Columbus, Ohio has played host to two International BEBRF
Conferences and it is an equal honor to host the 2012
Symposium, especially in our bicentennial year. For those
who will be driving, take advantage of the free parking
available at the Fawcett Center located on Olentangy River
Road. For those who plan to fly into Columbus, they will use
Continued on page 7
GLOBAL DYSTONIA REGISTRY
HELP uS LEARN MORE AbOuT DySTONIA (bEb IS A fOCAL DySTONIA)
The benign Essential blepharospasm Research
foundation (bEbRf) is a non-profit, 501c(3)
organization founded in 1981 by Mattie Lou
Koster, a blepharospasm patient.
Blepharospasm means eyelid spasm.
The eyelids unpredictably and involuntarily
clamp shut in both eyes, leaving the victim
functionally blind until the spasm ceases in a
few seconds or a few minutes.
Meige Syndrome is a similar condition in
which involuntary muscle spasms in the
lower face and jaw cause grimacing and jaw
movements.
Hemifacial Spasm generally begins as an
involuntary contraction around one eye that
gradually progresses down one side of the face
to the cheek, mouth and neck. It is not a form
of dystonia.
The goal of the Global Dystonia Registry is to support future dystonia studies,
including clinical and research trials, through the collection of data on persons
affected by dystonia (blepharospasm and Meige are focal dystonias). Although the
focal dystonias have many different manifestations, most experts believe they share
a common pathogenesis or mechanism that causes the disorder. The common
causes may be a similar gene defect, similar lifetime experiences, or both.
Collecting information from different patient populations may help to identify the
common features that they may share. The BEBRF is proud to be a part of this ongoing effort, which is a collaboration between dystonia patient organizations and
the research leaders of the Dystonia Coalition.* “The registry is a fantastic new
opportunity for the dystonia community worldwide. It is going to be extremely
valuable for fostering better communication between people who are affected by
dystonia and researchers who are trying to learn more about dystonia,” said Dr. H.
Jinnah, the principal investigator for the Dystonia Coalition.
To become involved:
Your participation will involve creating an online account by going to
www.globaldystoniaregistry.org and completing a profile with information about
Continued on page 14
blepharospasm and Meige are classed as
movement disorders and are described as focal
dystonias.
bEbRf is a member of the National Organization
for Rare Disorders (NORD), WE MOVE, Movement
Disorders Society, American brain Coalition,
Dystonia Advocacy Network, Dystonia
Coalition - ORDR, Harvard brain Tissue Resource
Center, Laurie Ozelius, PhD is the bEbRf
Representative to the Harvard brain Tissue
Resource Center
Benign Essential Blepharospasm
Research Foundation
637 North 7th Street, Suite 102
P.O. box 12468
beaumont, Texas 77726-2468
Phone: 409-832-0788
fax: 409-832-0890
E-mail: bebrf@blepharospasm.org
Web site: www.blepharospasm.org
Contributions may be sent to:
bEbRf
P.O. box 12468
beaumont, Texas 77726-2468
The Editorial Staff reserves the right to edit
any and all articles. It is our editorial policy
to report on developments regarding
blepharospasm, Meige and hemifacial spasm,
but we do not endorse any of the drugs or
treatments in the Newsletter. We urge you to
consult with your own physician about the
prodcedures mentioned.
The blepharospasm Newsletter is published
bi-monthly and mailed to patients, families,
doctors, friends of the foundation, and health
care providers around the world.
Subscription is $15.00 u.S. and $20.00
elsewhere.
TABLE OF CONTENTS
FEATURED STORY:
We’re getting excited about the
upcoming Columbus Symposium, and
we hope you are too. Take a look at the
program of events on page 6.
2012 BEBRF Symosium in Columbus, Ohio
John A. Burns, MD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Rare Disease Day . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Welcome to Columbus
Anita T. Croce, North-Central District Director . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Global Dystonia Registry. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Focus on BEBRF Mission: Patient Support
Barbara Benton, Eastern District Director . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
BEBRF Conference Symposium Faculty. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
BEBRF Symposium Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Towards a Deeper Understanding of Blepharospasm: It’s About Time
David A. Peterson, PhD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
Frontalis Antagonist Blink Syndrome
Mirwat S. Sami, MD, and Charles Soparkar, MD, PhD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Focus on Support. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Patient Stories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Ask the Doctor. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
New Website: NIH Clinical Research Trials and You . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Mark’s Ramblings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Research Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Support Group Meetings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
Call for Research Grant Proposals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
2
fOCuS ON bEbRf MISSION:
PATIENT SUPPORT
Barbara Benton, Eastern District Director
BEBRF BOARD OF DIRECTORS
In pursuit of BEBRF’s mission, the Foundation established a three-fold program: 1)
sponsorship of research, 2) information and education, and 3) patient support - provided
through support groups that bring patients together to share experiences, receive
encouragement, and get direction to doctors for treatment.
Previous newsletters listed various ways that patient support surfaces: to name a few conferences and symposiums, newsletters, support group meetings with informative
speakers, brochures and articles, our website and bulletin board. Support can come in
many shapes and sizes and different kinds of support appeals to different people. If you
do not live within a reasonable distance to attend a support group meeting, if there is no
area representative in your area, or if driving/travel is an issue, then what can you do to
meet other BEB patients and get support?
Here is an encouraging suggestion – small, very local groups in someone’s parlor, a
restaurant for breakfast, or at a coffee shop is a great way to keep it local and have a
support group nearby. In the last few years, new groups such as these have started and
are extremely successful. With a small group, you really get to talk and be heard; you do
not need to explain yourself because others are going through the same experiences; local
resources can be discussed, and new lasting friendships and bonds are born.
Newly diagnosed blepharospasm patients need to see and hear experiences from
seasoned patients. Some new patients live in fear of “how bad will it get” while others can
calm their fears. After meeting patients with positive attitudes, those experiencing
difficulties gain new coping skills. It is a very rewarding and uplifting feeling to help
others. Mattie Lou Koster, our founder, once said that if you support just one person, that
person needed it and it was worth it!
So we challenge you: Would you like to organize a small group for an informal meeting?
Do you want to choose the meeting place and time? Do you want
to meet other blepharospasm, Meige and hemifacial spasm
patients in your local area without travel? If so, please
contact your State Coordinator, Area Representative, or
District Director.
How can we actually facilitate these meetings? We
will attempt to contact other patients in your area to
ask if they, too, are interested and if BEBRF may share
their names and phone/email. Once a short list of
interested parties is completed, we can release that
list to you who can call the meeting at a place and
time of your choice. At this initial meeting you can
begin with introductions and “Care & Share” time. If
it goes well and you wish to continue to meet, we can
offer suggested topics or questions to motivate
discussions. Please give it some thought. The
rewarding feeling truly is worth it.
A new BEBRF representative who organized a local
support group meeting for the first time in 2011
said, “I felt gratified that I was able to help
someone who was reluctant to share, yet eager to
talk with others who were experiencing
blepharospasm. New friends can definitely be
made via our small gatherings.”
3
Mary Lou (Koster) Thompson, President
Nilda Rendino, first Vice-President &
Advocacy Chair
Glynda Lucas, Second Vice-President
Emil Weaver, Treasurer
Mary Smith, Secretary
Robert b. Daroff, MD, Advisor
Richard L. Anderson, MD, Advisor
Nell Williams
Virginia fawcett
Ed Dondzila
R.O. Williams
William Trussell
EX OFFICIO
Mark Hallett, MD, Chair
Medical Advisory board
barbara beckett, RN, Chair
Academy Arrangements
Robert Campbell, PhD
Webmaster
MEDICAL ADVISORY BOARD
Mark Hallett, MD, Chair, Medical
Advisory board, bethesda, MD
Craig Evinger, PhD, Stony brook, Ny
Joseph Jankovic, MD, Houston, TX
Laurie Ozelius, PhD, New york, Ny
James Patrinely, MD, Houston, TX and
Pensacola, fL
Peter J. Savino, MD, La Jolla, CA
Alan Scott, MD, San francisco, CA
Mark Stacy, MD, Durham, NC
Eduardo Tolosa, MD, barcelona, Spain
DISTRICT DIRECTORS & EMAIL
Anita Croce, North Central
IL, IN, IA, Ky, MI, MN, NE, OH, SD, WI, ND
dir-n@blepharospasm.org
Peter bakalor, Western
AK, AZ, CA, CO, HI, ID, MT, NV, NM, OR,
uT, WA, Wy
dir-w@blepharospasm.org
barbara benton, Eastern
CT, DE, DC, MA, MD, ME, NH, NJ, Ny, NC,
PA, PR, RI, SC, VT, VA, WV
dir-e@blepharospasm.org
fran Morgan, Southern
AL, AR, fL, GA, KS, LA, MS, MO, OK, TN, TX
dir-s@blepharospasm.org
NEWSLETTER DEADLINE DATES
ISSuE
May/June
July/Aug
Sept/Oct
Nov/Dec
COPy DuE DATE
April 3, 2012
June 4, 2012
August 3, 2012
October 3, 2012
bEbRf SYMPOSIUM FACULTY COLuMbuS, OHIO
John A. Burns, MD, Clinical Professor, Ohio State University Medical Center, is a graduate of Ohio
Wesleyan University and Ohio State University College of Medicine. He completed his internship
at Grant Medical Center and a three-year residency in ophthalmology at Ohio State University.
After completing his residency, he served a fellowship in ophthalmic plastic and reconstructive
surgery at the Manhattan Eye & Ear Hospital in New York City. Dr. Burns has practiced his
subspecialty of ophthalmic plastic surgery in Columbus, Ohio since 1968. He is an active teacher
in the Department of Ophthalmology at Ohio State University and holds the faculty rank of
Clinical Professor. He has also written numerous medical papers on lid and lacrimal topics, as
well as a number of chapters for ophthalmic textbooks. In addition to his teaching credentials,
he has served four terms as Chairman of the Department of Ophthalmology at Grant Medical
Center, as well as being a past president of the Grant Medical Staff. He is also the past
president of the American Society of Ophthalmic Plastic and Reconstructive Surgeons.
Dr. Kenneth V. Cahill, Clinical Professor, Ohio State University and co-director of the university’s
Oculoplastic Surgery Service, graduated from Ohio State University summa cum laude and as a
Phi Beta Kappa member. He also graduated from Ohio State University College of Medicine
where he received the Dean's Award. He completed his residency in ophthalmology at the
University of Pittsburgh, where he was chosen Chief Resident of the program. Dr. Cahill then
served a fellowship in ophthalmic plastic surgery at Grant Medical Center, Ohio State University
Hospital, and Children's Hospital of Philadelphia. He is board certified by the American Board of
Ophthalmology and is a fellow of the American College of Surgeons. Dr. Cahill has written
twenty-five scientific articles and he lectures nationally on the subject of ophthalmic plastic
surgery.
Robert B. Daroff, MD is Professor and Chair Emeritus of Neurology at CaseWestern Reserve
University School of Medicine and University Hospitals Case Medical Center. He was Chair of the
Department from 1980- 1994, when he became Chief of Staff of the Medical Center and
Associate Dean at the School of Medicine. He has served as President of the American
Neurological Association and the American Headache Society, and was Editor-in-Chief of
Neurology, the official publication of the American Academy of Neurology, from 1987 to 1996.
He has also served as an advisor to the BEBRF Board of Directors since 1983. His areas of major
clinical interests are headaches, neuro-ophthalmology, vertigo, and blepharospasm.
Jill Foster, MD, Associate Clinical Professor, Ohio State University, graduated summa cum laude
from Augustana College in 1982 before she went on to earn her MD from the University of
Illinois Medical School, where she also graduated with honors. After an internship at the
University of Illinois Hospital, Dr. Foster went on to complete her residency there in the
Department of Ophthalmology. She then completed a fellowship at the University of
Pennsylvania, Children's Hospital of Philadelphia in Ophthalmic Plastic and Reconstructive
Surgery. Dr. Foster has written and created numerous articles, abstracts, exhibits, and posters,
and has given a multitude of oral presentations. She is the present president of the American
Society of Ophthalmic Plastic and Reconstructive Surgeons.
4
Ali R. Rezai, MD is the Julius F. Stone Chair, Professor of Neurosurgery. Director, Center for
Neuromodulation, Director, Functional Neurosurgery, Director, Neurosurgical Innovations, Vice Chair,
Neurosurgery Clinical Research, The Ohio State University, Department of Neurological Surgery. Dr.
Rezai earned his medical degree with honors from the University of Southern California and
underwent neurosurgical training at New York University. He completed his subspecialty training in
functional neurosurgery at the University of Toronto and the Karolinska Institute in Stockholm,
Sweden. He then joined the neurosurgical faculty at New York University Medical Center, becoming the
director of the Center for Functional and Restorative Neurosurgery until January 2000. He then spent
10 years at the Cleveland Clinic Foundation. A board certified neurosurgeon, Dr. Rezai's clinical areas
of expertise are the neurosurgical management of patients with severe movement disorders such as
Parkinson's disease and dystonia, psychiatric conditions such as depression and obsessive compulsive
disorder, traumatic brain injury and chronic pain. He is one of a few doctors around the world
pioneering the use of deep brain stimulation for treatment-resistant depression and other disorders.
The method was created to combat Parkinson's disease and other movement disorders.
Raymond Sekula, MD graduated from the Georgetown University School of Medicine and
completed a residency in neurological surgery. He then completed a fellowship in skull base and
microvascular surgery at the Jannetta Center for Cranial Nerve Disorders in Pittsburgh,
Pennsylvania. An Associate Professor of Neurological Surgery, Dr. Sekula’s research is funded
through the National Institutes of Health. In the past five years, Dr. Sekula has developed the
largest operative experience with microvascular decompression surgery for patients with
hemifacial spasm in the United States. He is currently affiliated with the University of Pittsburgh
Medical Center – Hamot.
Charles N.S. Soparkar, MD, PhD, Clinical Associate Professor, Department of Ophthalmology,
Baylor College of Medicine, Clinical Specialist, Department of Plastic Surgery, M.D. Anderson
Cancer Center, Houston, Texas, is a native of Massachusetts, and received both his PhD in
molecular biochemistry and his medical degree from the University of Massachusetts. An avid
pupil and instructor, he has trained, taught, and published in the fields of plastic and aesthetic
surgery, oculoplastic surgery, molecular biochemistry, ocular pathology, ophthalmic oncology,
and ocular and peri-ocular aging and been invited to lecture across five continents. Dr. Soparkar
was the founder and coordinator of the Pan American Study Society (PASS), a research group
comprised of 30 leading oculoplastic surgeons from across the American continent amassed
with the goal of improving clinical knowledge and setting the highest standards of patient care.
THREE WAYS TO REGISTER FOR THE BEBRF SYMPOSIUM:
Online:
www.blepharospasm.org
By Email:
bebrf@blepharospasm.org
Or call the BEBRF Office:
1-409-832-0788
MAKE YOUR RESERVATIONS AS SOON AS POSSIBLE.
5
bENIGN ESSENTIAL bLEPHAROSPASM RESEARCH fOuNDATION SyMPOSIuM
SATURDAY, AUGUST 18, 2012, FAWCETT CENTER, COLUMBUS, OHIO
JOHN A. buRNS, MD, PROGRAM DIRECTOR
8:30 a.m.
Registration and Complimentary Continental Breakfast
9:05 a.m.
Clinical Features of Blepharospasm-Meige, Apraxia of Lid Opening
9:00 a.m.
9:15 a.m.
9:45 a.m.
9:55 a.m.
Welcome
John A. Burns, MD
Toxins for Facial Dystonia
John A. Burns, MD
Management for the Dry Eye
Questions and Answers*
Charles Soparkar, MD, PhD
John A. Burns, MD
Break
11:00 a.m.
Surgical Management of Blepharospasm and
Apraxia of Lid Opening
11:05 a.m.
11:35 a.m.
12:00 p.m.
1:00 p.m.
1:35 p.m.
2:00 p.m.
2:20 p.m.
3:30 p.m.
New Treatment Possibilities
Charles Soparkar, MD, PhD
Surgical Management for Lid Abnormalities
Associated Facial Dystonia
Jill A. Foster, MD
Kenneth V. Cahill, MD
Question and Answers*
Charles Soparkar, MD, PhD
Kenneth V. Cahill, MD
Jill A. Foster, MD
Complimentary Lunch
Surgical Management of Hemifacial Spasm
Ray Sekula, MD
Questions and Answers*
Surgical Panel
Deep Brain Stimulation for Facial Dystonia
Ali Rezai, MD
Question and Answers – The Big Picture*
Adjourn
Columbus Museum of Art
6
Charles Soparkar, MD, PhD
10:15 a.m.
10:35 a.m.
John A. Burns, MD
Robert B. Daroff, MD
* Written Questions Only
Santa Maria Replica
Columbus North Short
Columbus Topairy Pond
TWENTY-TWELVE BEBRF SYMPOSIUM
Continued from front page
the Port Columbus International Airport. There are many
nearby hotels for those who are planning to stay overnight.
Plan to arrive early and enjoy the company of fellow
patients then stay an extra day or two to explore the city.
It’s a perfect time of year to take a short vacation.
Columbus is home to one of the largest universities on
the planet, Battelle Research Facility, which is one of the
most respected research-and-development companies in
the country, the world headquarters for many Fortune 500
companies, the well-respected Columbus Zoo and Jack
Hanna’s stomping ground, the Center of Science and
Industry (COSI) — the best science museum as rated by
outsiders, major-league teams The Crew and the Blue
Jackets, the minor league Clippers, who play in one of
the best minor-league ballparks in the country; a strong
arts community; good parks and recreation; a local
music scene that is approaching the caliber of Austin,
Texas or Seattle; and a variety of restaurants, clubs and
concert venues that rival those in many bigger cities.
If you stay, there are many things to see and do. Take
a 2-hour guided SegAway tour of downtown Columbus.
Soak up some culture at the Wexner Center for the Arts
at The Ohio State University, Columbus Museum of Art,
the Riffe Center, the Ohio Craft Museum or at the many
art galleries located in the Short North area. Visit the
King Arts Complex or take in a show or concert at the
Ohio or Palace Theaters.
Tour the Santa Maria, the world’s
most authentic replica of the famous
ship. The Thurber House is a museum
dedicated to Columbus native James
Thurber and the Jack Nicklaus
Museum is dedicated to the man and
his golf. Ohio History Center and Ohio
Village are as popular for history buffs
as the COSI is for all things scientific.
The Ohio State Fair begins its run in
August and the Franklin Park
Conservatory will feature Blooms &
Butterflies through September. Take a
hike through one of the metro parks
in the area. And don’t forget to take in the Columbus
Zoo.
From sushi to bratwurst, when you speak of food,
Columbus has it all. Some well-known restaurants in the
vicinity are Schmidts Restaurant und Sausage Haus and
Barcelona in German Village; Jeni’s Splendid Ice Creams,
Marcella’s Ristorante, Sushi Rock and Rigsby’s Kitchen
in the Short; Claddagh’s Irish Pub in the Brewery District;
Cotters Restaurant, Bd’s Mongolian Barbeque and Buca
Columbus, Ohio Skyline
di Beppo in the Arena District. Columbus Fish Market,
Cap City Diner, Bravo Cucina Italiana are all on Olentangy
River Road and close to the Fawcett Center. If you want
to immerse yourself in all things “Buckeye,” then the
Buckeye Hall of Fame, located in the Grandview area, will
be a sure hit.
While you’re in Columbus, don’t forget the shopping
experience. Destination shoppers will enjoy the
sprawling city-within-a-city, Easton Town Center. Here
you will find theaters, entertainment
venues, restaurants such as The
Cheesecake Factory, Brio’s Italian
Bistro, the Ocean Club, and Smith &
Wollensky and exclusive retailers such
as Macy’s, Nordstrom, Crate & Barrel,
Anthropologie, and Tiffany & Co.
Across town Polaris Fashion Place
boasts a Saks Fifth Avenue, Von Maur
and Macy’s along with many boutiques
and restaurants. If neighborhood
shopping is more your style, try the
North Market, the many specialty
shops in the Short North Arts District
or the historic downtowns of one of
Columbus’ suburbs such as Westerville or Worthington.
Like antiques? Try the Greater Columbus Antique Mall in
German Village or historic downtown Powell.
We are looking forward to seeing you all here in
Columbus, Ohio. Please make an effort to attend this
year’s BEBRF Symposium. It promises to be a good one.
For information on what to do in Columbus, visit
www.experiencecolumbus.com or call the Greater
Columbus Convention Center at (614) 222-3005.
From sushi to
bratwurst, when
you speak of food,
Columbus has it all.
7
TOWARD A DEEPER UNDERSTANDING OF
BLEPHAROSPASM: IT’S ABOUT TIME
David A. Peterson, PhD
Institute for Neural Computation, University of California, San Diego (UCSD)
For most blepharospasm patients, the symptoms are not
present all of the time. They may be alleviated when speaking,
singing, or touching the face and they are generally absent
during sleep. Although the brain is clearly in a very different
mode while sleeping, the subtle dependency on certain actions
while awake is puzzling. In this case, certain tasks can
temporarily alleviate the symptoms. In other forms of focal
dystonia, such as focal hand dystonia, an opposite effect can be
seen. Those patients may show symptoms only during certain
tasks, in some cases of musician’s dystonia only while
performing certain passages of specific pieces. This feature of
focal hand dystonia is commonly referred to as “task
specificity.” At a gross level, blepharospasm patients exhibit the
same phenomenon but with the opposite effect, in which the
symptoms are alleviated by certain tasks. Thus both forms of
focal dystonia exhibit features of task specificity. What clues
can this provide about the brain circuits involved in the disease?
While this remains one of the greatest mysteries in dystonia
research, neuroscience is beginning to assemble the pieces of
the puzzle.
One of the most important neural pathways for controlling
voluntary behavior is the circuit from the cortex through the
basal ganglia and thalamus back to the cortex. Although the
details are complex, there are a few simple features that should
be recognized. First, the basal ganglia receive input from
virtually all of the cortex. Thus, it receives information not only
from areas of the cortex involved in planning and preparing
movement, but also from areas representing sensory input.
This combination of sensory information and “motor plan” can
be collectively thought of as “state.” Second, the basal ganglia
send outputs to two major destinations: the brain stem and, by
way of the thalamus, the frontal cortex. Both of these, in turn,
exert control over a wide variety of motor systems, including the
brain stem nuclei controlling the muscles involved in
blepharospasm. What exactly is the basal ganglia doing in this
circuit? While this remains an intense area of research, the
contemporary view in neuroscience is that the basal ganglia are
doing “action selection.” In other words, given the “state” input,
what should be chosen as the next “action?” The third feature
is critically important but also more complex. The basal
ganglia’s role in action selection plays out over multiple time
scales. This can be most easily understood from the anatomy.
The pathways from frontal cortical areas through basal
ganglia’s and thalamus go back to the same frontal cortical
areas. Those frontal cortical areas are involved in motor
planning over longer time scales as you go anteriorly (toward
8
the front of the head) from the primary motor cortex. Although
historically viewed as separate, parallel loops, contemporary
refinements of our understanding of this circuit indicate that
there are several forms of complex connections between them.
In principle, then, the basal ganglia could play a key role in how
a given time scale’s motor plan influences a shorter time
scale’s motor plan, eventually cascading down to the level of
the timing of specific muscle activation patterns. Similarly, the
basal ganglia projections to brain stem nuclei are combined
with projections from cortex, with different timing. Collectively
these pathways determine, for a given context or “state,” which
specific actions are chosen in which sequence and with what
timing. As with other forms of dystonia, the specific muscle
activations that give rise to the symptoms are not abnormal per
se. Rather, it is their timing, relative to each other and the
patient’s current “state,” that is abnormal.
To develop a deeper understanding of blepharospasm, we will
need to understand the relative timing of influences through
these various pathways, and how that goes awry in the disease.
My overarching strategy is to try to link evidence for
abnormalities in the neurobiology with detailed clinical
information. For example, thanks to support from the BEBRF,
we are using evidence for dopamine abnormalities in the basal
ganglia to construct computer simulations of how those
abnormalities modify the response of neurons in the basal
ganglia to cortical inputs. The most striking effect is in the
relative timing of spiking patterns in those neurons. We are in
the process of embedding these effects into large scale
simulations of the basal ganglia network, incorporating basic
research on the connections between those loops. Through
support from the Dystonia Coalition, of which the BEBRF is a
key contributor, we are also using computer-based video
processing software, known as the Computer Expression
Recognition Toolbox (CERT), to assess symptoms in patient
videos. The first stage of this research is to determine whether
CERT gives ratings of symptom severity that are similar to
clinician evaluations. In the long term, we envision using the
frame-by-frame information from CERT to measure the time
course of activation of periocular muscles with unprecedented
temporal resolution. Ultimately, this information can be linked
with the computer simulations of the neural circuitry to provide
a complete, coherent picture of the exquisite timing with which
symptoms are evoked. This will also give us a principled basis
for designing new treatments aimed at the pathophysiology of
the disease rather than just the symptoms.
FRONTALIS ANTAGONIST
BLINK SYNDROME
Mirwat S. Sami, MD and Charles Soparkar, MD, PhD
As we already know, eye irritation
from a variety of sources seems to play
an important role in the development
and propagation of benign essential
blepharospasm (BEB). Inadequate tear
films which fail to provide eye surface
protection have been the topic of many
articles in this newsletter. Such tear film
problems may include insufficient tear
volume, tear instability, and “toxic” tears
containing oxidized or rancid oils. Often,
almost any tear film problem is said to
cause “dry eye.”
We have described a condition that
commonly worsens “dry eye” symptoms
in people with BEB called “Frontalis
Antagonist Blink Syndrome” or FABS.
Understanding FABS can significantly
alter its impact, improve eye comfort
and health, and for some people with
BEB, decrease eye spasms.
The frontalis muscle is the muscle of
the forehead that raises the eye brows
and is one of the muscles that acts
against (is an antagonist to) the group of
muscles which spasm during BEB to
cause forced eyelid closure or blinking
(the procerus, corrugators, and
orbicularis muscles). Don’t let these
names and terms confuse you. The
concept is very simple.
What is FABS? FABS is a condition
that occurs when a person overworks
their forehead muscle to raise their
eyebrows to be able to see. Most people
with FABS don’t even know they are
constantly raising their eyebrows. They
have done it for so long, they don’t feel it
and have trouble fully relaxing their
eyebrows and forehead when asked to
do so, but such individuals with longstanding FABS are easy to recognize by
the deep horizontal wrinkles they create
in their forehead.
Who gets FABS? FABS develops in
anyone who has trouble normally
keeping their eyes open. This may be a
person with droopy eyelids
(blepharoptosis or eyelid ptosis), lots of
extra heavy eyelid skin or fat
(dermatocholasis), droopy brows (brow
ptosis), or even BEB.
So why is FABS a problem? The
average person normally blinks
somewhere between 12-25 times a
minute. These are complete blinks
where the upper and lower eyelids meet
solidly and the eyes achieve momentary
Understanding FABS
can . . . for some
people with BEB
decrease eye
spasms.
complete closure. You may think of a
blink as the opposite of a windshield
wiper. A windshield wiper briefly dries
the windshield. A blink spreads the tear
film and briefly wets or lubricates the
eye. Without a normal blink, we don’t
have normal eye wetting and develop a
“dry eye.” Ask someone without BEB to
raise their eyebrows as high as they can
and then try to “normally” blink without
squeezing their eyes really hard. They
will experience a “flutter” type of closure
where the upper and lower eyelids don’t
fully meet, and after a minute of two,
they will begin to experience a dry, gritty,
burning feeling in their eyes. That’s like
a pair of windshield wipers that travel
only half way across the windshield. Eye
doctors often call this “flutter” blink a
partial, incomplete, or pseduo-blink.
But FABS causes two other problems
for people with BEB as well. The first is
that when the eyes are not actively
spasming, they may actually be dragged
up too high by the eyebrow elevation.
This increases the surface area of the
eye that is exposed and increases the
rate of tear film evaporation, leading to
worse “dry eye.”
Normal blinking pumps normal
amounts of certain tear components
from glands in the eyelids into the tear
film. In BEB, eyelid spasms may force
too much material into the tear film at
one time, and then the “flutter” blink in
FABS doesn’t put in nearly enough. This
sequence leads to an irregular and
unstable tear film composition and
worsens “dry eye.”
In people with BEB, the “dry eye”
conditions caused by FABS worsen eye
irritation and promote eyelid spasms,
inciting people with BEB to raise their
brows more to keep their eyes open,
worsening FABS, making more eye
irritation, exacerbating eyelid spasms…
a vicious cycle!
What can be done about FABS? There
are two approaches to improving FABS
in people with BEB. The first is surgical.
Droopy brows, droopy eyelids, and extra
eyelid skin should all be addressed to
minimize the constant downward drag
on the eyelids and the compensatory
(antagonistic) over action of the
forehead (frontalis muscle).
The second is behavioral. Many people
with BEB react to eyelid spasm by trying
Continued on page 13
9
FOCUS ON SUPPORT
OHIO: A well-attended meeting was heldthin the Fall in
Columbus, Ohio to celebrate BEBRF’s 30 Birthday. Anita
Croce, District Director, organized the meeting and Dr. John
Burns was the speaker. A discussion took place regarding the
BEBRF Symposium, which will be held in Columbus August
18, 2012. A birthday cake and other treats were shared after
the meeting.
CENTRAL VIRGINIA: The Central Virginia
Blepharospasm support group met at
the Twin
Hickory Library in Glen Allen, Virginia
recently.
Paula Nichols, Area Representative, orga
nized the
meeting and. Nilda Rendino, BEBRF Firs
t VicePresident, led a question and answer
session.
NORTHEAST PENNSYLVANIA: The Northeast Pennsylvania
support group met at the end of 2011 to celebrate BEBRF’s 30th
Birthday. After an interesting meeting covering various treatment
options, birthday cake and other treats were shared by the
attendees. Nancy Williams, Pennsylvania State Coordinator,
facilitated the meeting.
Standing L–R: Ed Fealey, Brian Dockey, Jim Rienhardt, Richard
Rose, Ellen Fealey, Alice Liska, John Liska, Bernie Quinn, Ann
Marie Liska, Nancy Knappenberger, Marjorie Dann, Jerry Dann,
Bob Longenberger, Maggie Jenkins, Dave Jenkins, and Donna Tedesco, Sitting L-R: Deanna Dockey, Abigail Dockey, Nancy
Williams, Daphne Rose, Carol Rienhardt, Marian Vozel, Pat Soulia, Ed Soulia, and Johanna Longenberger. Not pictured: Jay
Knappenberger and Bill Williams.
NEW JERSEY: The New Jersey Support Group held a meeting recently
at the Holy Innocents School in Neptune, NJ. Dr. Marcie Rabin,
Neurologist and Movement Disorder Specialist, was the guest speaker.
Bonnie O’Rourke, Area Representative, facilitated the meeting.
Barbara Benton, Eastern District Director, also attended.
Back Row L-R: Lee Ann De Berry, Len Freeman, Keith Petenich, Ben
Yeh, Pat Carew, Catherine Decker, Virginia Hill and Jennifer Fernandes.
Front Row L-R: Zeb Gaspar, Barbara Benton, Rita Molnar, Moe Halbert,
Grace Soang, Susan Phillips, Dolores Cooke and Bonnie O’Rourke. Not
pictured Ilana Knopfelmacher.
10
PATIENT STORIES
THE IMPORTANCE OF A BEB FRIEND
Linda Bobkoskie
I want to tell you how important the BEBRF is to
me and the contact information that you provided
has helped me. I was diagnosed with BEB two years
ago. I felt so alone because I had never heard of
BEB before and neither had anyone else in my circle
of family and friends.
One of my doctors told me there was a foundation
and I searched the Internet and found your website.
I learned that BEB is a very rare disorder. The site
listed people to contact and I contacted the BEBRF
office and Cheryl Kudlawiec of Northern Cambria, PA
on the local level. I was so thrilled to find someone
in the same county (Cambria County, PA) as me.
Cheryl called me and talked to me at great length
and the BEBRF office responded with help and
information..
Cheryl has been a great help to me as she has had
BEB for a long time...19 years I believe. She told me
about her experiences. A difference we have is Cheryl
also has cervical dystonia as well as blepharospasm
and I have blepharospasm and photophobia. She
talked to me and reassured me about what I was
going through in my life. She gave me sensible
guidance. Finally, I had someone who understood
and knew about BEB.
She told me that some time ago, she had started
a support group in Ebensburg, PA, that fell apart
because of the death of some members and others
going into nursing homes.
Cheryl telephones or emails me about every six
weeks to see how I am doing. We talk about BEB,
our lives, and our families. She has become more
than an acquaintance.
I am so glad BEBRF published Cheryl Kudlawiec’s
name as a contact for the BEBRF in my area.
PLEASE continue to do so. Maybe enough people
with BEB will contact her through the BEBRF site,
then maybe again, she could have a support group
for people with BEB like me. I would gladly join it.
REMEMBER BEBRF
IN YOUR WILL
APPLYING FOR SOCIAL SECURITY
DISABILITY - MY STORY
Patricia Schleyer
Let Me introduce myself – I am 61 years of age. I was first
diagnosed with benign essential blepharospasm in September of
2009 by my ophthalmologist; he said I had a severe case. At that
time, I was working full-time as an LPN in a doctor’s office. It was a
challenge to commute each day (45 minutes each way) and to walk,
as well as to perform my duties. I did begin BOTOX® treatments in
December 2009, after a long battle with my insurance company. The
treatments have not always been successful, so I have limited
results. The bottom fell out of my life in July 2010 when my place of
employment laid me off. I was devastated; I had been there 8 years
and 11 months. I went home in a panic as I had not only lost my
only source of income (I am single) but also my medical insurance.
Then to top things off, I thought, who is going to hire me at my age?
Plus the current job market was so bad, and so many people were
applying for the same position. In fact, at one office I went to for a
pre-interview, there were 7 others applying for the same position, and
I was told they were taking interviews all week. I did not think I had a
chance for the second interview, and so it went with each interview
there after. I thought long and hard about applying for Social Security
Disability, as I have worked since I was 14 years of age. I decided to
apply (such a daunting task, or so I thought), what is the worst that
could happen is that they deny me and I would have to appeal.
So I went online and applied. In the meantime I was visiting the
BEBRF website, and noticed that they had information on applying for
disability, so I requested the information. It was the best thing I could
have done, as it is filled with a wealth of information on how to apply,
how to fill out the information, how to include as much information as
possible, even how I should send information on benign essential
blepharospasm to disability, as well as a copy of a letter for my
ophthalmologist to help him when Disability, contacts him. When I
received the packet from Social Security Disability I felt very prepared
to fill it out. Once Social Security Disability received the paperwork
back, they contacted me and assigned me a case worker. I kept in
close contact with her (almost to the point of being a pest but not
quite).
I was shocked when I received the notice that I had been
approved for Social Security Disability. In fact, I had to read it three
times, as I was told by so many that they never approve you the first
time and that I would have to appeal it.
What I walked away with from this whole experience is the
importance of being educated as far as how to apply for Social
Security Disability and how essential it was to have access to the
wealth of information provided by the BEBRF Research Foundation.
Thus the so called daunting task of applying was eliminated! I highly
recommend it for anyone who will be applying for disability.
11
ASK THE DOCTOR
Disclaimer: Neither the BEBRF nor members of the BEBRF Medical Advisory Board has examined these patients
and are not responsible for any treatment.
Q: What can be done to stop excessive tearing?
A: It depends what is causing the tearing. Is it after myectomy
surgery? If so, you may have incomplete closure of the lids,
resulting in dry eyes and reflex tearing. In that case, you would
need artificial lubrication or punctal plugs. If it is an
inflammation, then Restasis might be better.
Neil Miller, MD, Wilmer Eye Institute, Johns Hopkins,
Baltimore, Maryland
Q: I have been getting BOTOX®, for blepharospasm, since
1998. I have just read about Zytaze, a medical food that
should enhance the effectiveness of the botulinum toxin
injections. What do the doctors think about this claim? Are
there any down sides with taking this product? Does the
dose, 25 mg of zinc citrate and 1500 mg of phytase,
reduce immune system functioning?
A: Our experience with Zytaze continues to be profoundly
positive. About 92% of people who try Zytaze report an
average 30% increased duration of botulinum toxin effect
both in our original study and in our subsequent
experience. Most (not all!) of our patients who struggled to
have a strong benefit from the botulinum toxin treatments
before Zytaze, now are doing much, much better, and I
have heard the same feelings echoed by several doctors
whose experience mirrors our own. As a physician, one of
the things that I like the most about my patients taking
Zytaze is that their treatment-to-treatment response
variation is dramatically reduced, so I don’t have to keep
changing each patient’s injection pattern based upon their
prior experience.
Of note, Ocusoft discovered that pharmacies were marking
up Zytaze 200 - 300%, so Ocusoft now distributes directly
to physicians who can then provide Zytaze to their patients
at a fraction of pharmacy cost. Having said all that, I stress
to my new patients that 92% responders means that 8% of
people in our practice do not see a benefit from Zytaze, and
if other physicians were not having success, they might not
have contacted me with negative feedback. We are very
excited about Zytaze, but this approach to patient care and
toxin treatment is brand new. I still don’t know what is the
optimum dose or frequency of zinc and phytase for
everyone (or even anyone) receiving botulinum toxin
12
treatments. All I know is what we have seen work so far.
We have several patients who take half the recommended
dose with good effect, and we have two who take twice the
recommended amount to achieve maximum benefit. The
relatively high dose of zinc and phytase given for a short
period right before toxin injections was designed to prevent
any potential systemic toxic effects, and I have heard of
none.
Charles N. S. Soparkar, MD, PhD, Plastic Eye Surgery
Associates, PLLC, Houston, Texas
Q: Since we know that females outnumber males with BEB,
are women more likely to be affected by spread? It seems
like more women come down with another dystonia in
lower face, throat or neck with blepharospasm coming first.
A: It is true that there are patterns of spread of dystonia.
Patients who have blepharospasm first may develop other
dystonias such as spasmodic dysphonia. Those patients
that have other dystonias, such as cervical dystonia, may
eventually get blepharospasm. These patterns - which
dystonias, frequency of spreading, and timing of the spread
- have been studied in several epidemiological studies.
Blepharospasm is not necessarily the first dystonia that a
person might get. However, spread is more likely in
patients that have blepharospasm first. Mark Hallett, MD, NINDS, NIH, Bethesda, Maryland
Q: I am wondering about Vitamin B12 injections - if they could
help relieve blepharospasm. A member of our support
group has a parent in another country with the disorder and
that is the treatment she is getting.
A: There is absolutely no evidence that vitamin B12 is
effective in the treatment of blepharospasm and there is
no evidence that B12 deficiency causes blepharospasm.
Unfortunately, B12 is frequently prescribed for a variety of
conditions and even though some patients report
improvement, this response may represent a “placebo
effect.”
Joseph Jankovic, MD, Director, Parkinson’s Disease Center
and Movement Disorders Clinic, Baylor College of Medicine,
Houston, Texas
NEW WEBSITE: NIH CLINICAL RESEARCH TRIALS AND YOU
The National Institutes of Health has created a new
website, NIH Clinical Research Trials and You
http://www.nih.gov/health/clinicaltrials/ to help people learn
more about clinical trials, why they matter, and how to
participate. From the first cure of a solid tumor with
chemotherapy to the use of nitroglycerin in response to heart
attacks, clinical research trials — or research studies involving
people — have played a vital role in improving health and
quality of life for people around the globe.
Clinical trials are essential for identifying and
understanding ways to prevent, diagnose, and treat disease.
Research has shown that among the greatest challenges to
recruitment of volunteers is the lack of general knowledge
about what trials involve, where they are carried out, and who
may participate.
“The ability to recruit the necessary number of volunteers is
vital to carrying out clinical research that leads to health and
medical advances,” said NIH Director Francis S. Collins, MD,
PhD “This new, centralized resource will make it much easier
for the public and health professionals to learn about clinical
trials and how people can participate in them.”
Visitors to the website will find information about:
• The basics of clinical trial participation
• First hand experiences from actual clinical trial
volunteers
• Explanations from researchers
• Links on how to search
for a trial or enroll in a
research matching
program
In addition, health care
professionals can read about
evidence-based strategies for
talking with patients about
trials, print audience-tested posters to help promote trials in
clinics and offices, and find other educational materials.
NIH supports clinical research trials across the country and
throughout the world. NIH’s ongoing effort to raise awareness
about clinical research and educate potential clinical trial
participants about the option of a clinical trial is vital to
developing public support and understanding for how clinical
research drives medical discovery and improves health
outcomes.
About the National Institutes of Health (NIH): NIH, the
nation’s medical research agency, includes 27 Institutes and
Centers and is a component of the U.S. Department of Health
and Human Services. NIH is the primary federal agency
conducting and supporting basic, clinical, and translational
medical research, and is investigating the causes,
treatments, and cures for both common and rare diseases.
For more information about NIH and its programs, visit
www.nih.gov.
FRONTALIS ANTAGONIST BLINK SYNDROME
Continued from page 9
to force their eyelids back open, generally using the frontalis
muscle. To break the FABS response we advise the following:
1. Don’t fight the spasm — for most people with BEB, the
spasms are short in duration, and unless there is a
reason to immediately need to see, allow the spasm to
occur and achieve its own moment of relaxation.
2. Allow the eyelids to drift open — don’t force the eyes
wide open, or if you do, quickly learn to relax the
eyebrows.
3. Blink — many people with BEB are so focused on
getting/keeping their eyes open, they don’t allow their
eyes a “normal” blink. During periods of non-spasm,
frequent, complete blinks may diminish spasm
frequency, intensity, and duration.
For some, this triad of behavioral change has been quite
helpful.
What should NOT be done for FABS? Botulinum toxin should
probably not be used excessively above droopy eyebrows or
droopy eyelids to interrupt frontalis contraction and eye brow
elevation, since in such individuals, until their anatomic
problems are corrected, the frontalis muscle may be the only
means they have of keeping their eyes open enough to see.
Also, some people with BEB require the frontalis muscle to
“break” their eyelid spasms, and excessive toxin treatment of
the forehead may prevent this function.
We have not identified any people in whom FABS was the
sole cause of their blepharospasm, but in our experience, it is
a significant contributor in many. For some, FABS awareness,
thoughtful blink management, and surgically correcting
drooping eyelid issues has been very helpful in FABS
interruption and BEB management.
13
MARK’S RAMBLINGS
Mark Sheeler is the Coordinator of the West San Fernando
Valley, California Support Group
1:
2:
3:
4:
5:
6:
7:
8:
9:
If evolution is fact, why do mothers only
have two hands?
Hard work never killed anyone but why
chance it?
A picture is worth a thousand words, but it
uses up a thousand times the memory.
The meek shall inherit the earth after we’re
through with it.
Originality is the secret of hiding your
source.
All I’m asking is one chance to prove money
doesn’t make you happy.
Teach a child to be courteous and when he
grows up, he’ll never be able to squeeze his
car onto the freeway.
If at first you don’t succeed, redefine
success.
A hangover is the wrath of grapes!
10: Xerox and Wurlitzer will merge to market
reproductive organs.
I’d better quit while I’m still behind
RESEARCH STUDY
Researchers at Mount Sinai
School of Medicine, New York, NY
are studying Primary Focal
Dystonias, which include
blepharospasm, cervical dystonia
and oromandibular dystonia. To
see if you are eligible to
participate or for more
information on the study, contact
Dr. Kristina Simonyan at 1-212-241-0656.
14
GLOBAL DYSTONIA REGISTRY
Continued from page 2
your dystonia, treatment you have had, and how dystonia
has affected you and/or your family. Occasionally you will
need to update your profile as information about you
changes.
You may create an account if you have a form of
dystonia, OR you are related by blood to someone with
dystonia. Please know your responses will remain
confidential.
You understand that:
• Creating an account and completing a profile
assumes that you have consented to participate in
the Global Dystonia Registry;
• Private information about you and your health will
be stored in a secure database;
• Your private information will never be shared with
other people;
• The de-identified information about your condition
may be shared with other people in the registry and
with other doctors and researchers, but we will never
give out any contact information;
• Your participation is voluntary and you may
withdraw from the registry at any time.
You will be contacted occasionally to ask that you
update your profile and to provide you with information
about research opportunities relevant to you.
Dystonia patients are grateful to the following patient
organizations for sponsoring this registry: American
Dystonia Society, Benign Essential Blepharospasm
Research Foundation, Dystonia Ireland, Dystonia Medical
Research Foundation, National Spasmodic Dysphonia
Association, National Spasmodic Torticollis Association,
The Bachmann-Strauss Dystonia & Parkinson
Foundation, and The Dystonia Society.
GOOD NEWS!
The Department of the Defense has once again
included dystonia in the list of conditions eligible for
funding through the DoD Medical Research Program.
Some dystonia research projects have already been
approved as a result of dystonia being on the list. The
Dystonia Advocacy Network (DAN) will continue to work
to ensure that dystonia stays on the list, since it must be
renewed on an annual basis. However, your assistance
may be needed in this effort if your congressman or
senator is a legislator key to this issue. Please be sure to
keep the BEBRF informed of your latest email address.
* The Dystonia Coalition is a cooperative project between medical researchers and
patient advocacy groups. Its mission is to advance the pace of clinical and
translational research in the dystonias to find better treatments and a cure.
SUPPORT GROUP MEETINGS
To get your support group meeting in the next issue of the newsletter,
lease notify the foundation office, before April 3, 2012, the next newsletter deadline.
NEW STATE COORDINATOR
New York
Lee Ann DeBerry
19 Robinn Dr; Middletown, NY 10940
Tel. (845) 344-3930
Email: leann@frontiernet.net
NEW AREA REPRESENTATIVES
New Jersey
Catherine Decker
65 Cascade Way; Butler, NJ 07405
Tel. (973) 838-9356
Email: cdeck117@yahoo.com
South Dakota
Deanna A. Hall
1424 S. Miller Ave; Mitchell S.D. 57301-4202
Tel: (605) 996-8721…Email: drhall@midco.net
NEW EMAIL
Texas
Ena Wilmot
Dallas/Fort Worth, Texas Area Representative
Email: enamwa@hotmail.com
NEW CONTACT PERSON
Maryland
Kim Farnaro
2531 Ebbvale Rd
Manchester, MD 21102-1307
Tel. (410) 374-6932
Email: kimfornaro@hotmail.com
NEW TELEPHONE NuMbER
South Carolina State Coordinator
Pat Miller; Tel. (864) 354-4699
SuPPORT GROuP MEETINGS
North
Decatur, Illinois
Wednesday, March 21, 2012; 1 – 3 p.m.
Prime Time, 102 Kenwood, Decatur, IL
Contact: Betty Voyles…(217) 877-6947, Email:
booperx2@att.net
Evanston/ Chicago, Illinois Area
Sunday, March 25, 2012; 2 – 4 p.m.
Evanston Hospital, Rooms G954 and G958,
Evanston, IL
Contact: Shelley Goddard…(847) 284-8634,
Email: gowithgoddard@yahoo.com
West Bloomfield, Michigan
Saturday, April 28, 2012; 1 – 3 p.m.
Henry Ford West Bloomfield Hospital, 6777
W. Maple, Room DK, West Bloomfield, MI
48322
On Maple Rd between Drake and Halstead
Rds. Located West of Orchard Lake Road,
and North of I-696 Fwy
We will discuss blepharospasm, Meige, the
Dystonia Registry, & the upcoming 2012
Symposium in Columbus, Ohio.
Contact: Janis Madigan…Tel: (248) 305-9664,
Email: janis.madigan@yahoo.com
Columbus, Ohio
Sunday, April 15, 2012; 2 - 4 p.m.
The Eye Center, 262 Neil Ave, Columbus OH.
43215
Parking garage available.
Speaker: Dr. John A. Burns.
Contact: Anita Croce, Tel: (614) 262-4164,
Email: dir-n@blepharospasm.org
South
Huntsville, Alabama
Blepharo-Buddies Awareness Support Group
Sunday, April 22, 2012; 1 – 4 p.m.
Dowdle Center, 109 Governors Dr., Huntsville, AL
Speaker: Dr. Louise Ledbetter, Neurologist
Contact: Linda Webb…(256) 723-2661 Phone
and Fax
Nashville, Tennessee
Saturday, March 24, 2012; 1 - 3 p.m.
Una Church of Christ, 1917 Old Murfreesboro
Rd, Nashville, TN 37217
Speaker: Dr. Gary A. Mellick, Chairman,
Department of Neurology, Riverview Regional
Medical Center
Contact: Sonya Miller…(615)367-0969
(home), (615)594-1631 (cell), Email:
cmsa57@bellsouth.net
East
Maryland
Sunday, March 4, 2012; 2:30 p.m.
Owen Brown Community Association, Dasher
Green Room, 6800 Cradlerock Way,
Columbia, MD
Speaker: Neil R. Miller, MD, Wilmer Eye
Institute, Johns Hopkins
Contact: Norm Dubin…(410) 358-5014, Email:
normdubin@gmail.com
Greater Boston, Massachusetts Area
Sunday, April 29, 2012; 1 – 4 p.m.
New England Rehab Hospital, 2 Rehabilitation
Way, Woburn, MA 01801
Speaker: Dr. Thomas Hedges III, NeuroOphthalmology, New England Eye Care, Tufts
Medical Center
Light refreshments will be served – please
RSVP
Contact: Sande Young…(617) 527-1726,
Email: ssyspts33@aol.com
New Jersey
Saturday, May 19, 2012
12:30 – 3:00 p.m.
Holy Innocents School Conference Room, Rte
33 and W Bangs Ave, Neptune, NJ 07753;
RSVP Requested
Contact: Bonnie O'Rourke….(732) 922-4429,
Email: tombor1@verizon.net
New York City
Saturday, April 21, 2012; 11 a.m. – 3 p.m.
St Lukes Roosevelt Hospital, Roosevelt
Division, 1000 Tenth Avenue @ 58th St, (2nd
floor, conference room “B”) New York, NY Speaker: Dr M Niethammer, North Shore
University Hospital
Contact: Lee Ann DeBerry…(845) 344-3930,
Email: leann@frontiernet.net
Long Island, New York
Tuesday, April 10, 2012; 7 – 8 p.m.
Leslie Munzer Neurological Institute, 1991
Marcus Ave, Ste 108, Lake Success, NY
11042
Registration is required by the morning of the
meeting.
Contact: Jovanna Little…(516) 442-3527,
Email: jlittle@lmni.org
Philadelphia, Pennsylvania
Sunday, March 11, 2012
12:30 P.M. (Lunch will be provided)
Wills Eye Hospital, 900 Walnut St,
Philadelphia, PA
SPEAKER: Dr. Daniel Kremens (Jefferson
Hospital), MERZ Representative will be
present to share info about Xeomin. Mary Lou
Thompson, BEBRF President and Barbara
Benton, Eastern District Director, will be in
attendance
Contact: Barbara Benton…(410) 884-9048,
Email: dir-e@blepharospasm.org
Northern Virginia
Saturday, April 28, 2012; 1 – 3 p.m.
Office of Dr. Simon Fishman, 7115 Leesburg
Pike, Ste. 201, Falls Church, VA 22043
Speaker: Dr. Simon Fishman – “New Research
and new products.”
Contact: Barbara Benton….(410) 884-9048,
Email: dir-e@blepharospasm.org
West
West San Fernando Valley, California
Sunday, May 20, 2012; 1:30 – 4:00 p.m.
Northridge Hospital and Medical Center,
18300 Roscoe Blvd, (Corner Reseda Lower
Level Auditorium), Northridge, CA
Speaker: Dr. Melanie Erb
Contact: Mark Sheeler…(818) 348-6127, Fax:
(818) 348-7990, Email: smarkam@att.net
Albuquerque, New Mexico
Saturday, March 17, 2012; 1 p.m.
El Camino Medical Center, Pinon Rm., 1st
Floor, 8100 Constitution Pl. NE,
Albuquerque, NM
Speakers: Cathy Adair and Brad Evans, Merz,
about Xeomin
Contact: Al Deguio…(505) 298-6129, Email:
deguio@comcast.net
Northwest Oregon/Southwest Washington
Sunday, April 29, 2012; 1:30 p.m.
Neurological Sciences Center, 1040 NW 22nd
St., Portland, OR , 2nd Floor
Contact: Ruby Lambert…(541) 734-2308
(home), (541) 326-5394 (cell), Email:
heyu62@charter.net
If yOu WOuLD LIKE TO START A SuPPORT GROuP IN yOuR AREA, CONTACT yOuR DISTRICT DIRECTOR OR THE bEbRf OffICE fOR ASSISTANCE.
15
CALL fOR RESEARCH GRANT PROPOSALS
The Benign Essential Blepharospasm Research Foundation (BEBRF) funds research
into new treatments, pathophysiology and the genetics of the following focal
dystonias: benign essential blepharospasm (BEB) and Meige Syndrome (cranial
and oromandibular dystonia). Research into photophobia, dry eye and apraxia of
eyelid opening as they relate to BEB and Meige and their treatment will also be
considered for funding. Funds up to $150,000 are available
annually. MD or PhD required for principal investigator.
Non-U.S. citizens working at institutions abroad are
also eligible to apply for a research grant. Deadline
to apply for this year is August 31, 2012. Grant
guidelines may be obtained from:
Benign Essential Blepharospasm Research
Foundation, P.O. Box 12468, Beaumont, TX
77726-2468
Phone: 1-409-832-0788, Fax: 1-409-832-0890
Email: bebrf@blepharospasm.org or visit the
website: www.blepharospasm.org to download forms.
l Enclosed
Dated Materia
P.O. BOX 12468
BEAUMONT, TEXAS 77726-2468
409-832-0788
BENIGN ESSENTIAL BLEPHAROSPASM
RESEARCH FOUNDATION, INC.
Non Profit Org.
U.S. Postage
PAID
Beaumont, Texas
Permit #299
It is our editorial policy to report on developments regarding BEB/Meige and related disorders but do not endorse any of the drugs or
treatments in the Newsletter. We urge you to consult with your own physician about the procedures mentioned.