Tremor Talk - Essential Tremor

Fall 2007
Vol XXIII, Issue 3
Non-Profit
U.S. Postage
PAID
Shawnee Mission, KS
Permit No. 637
Address Service Requested
Page 4
Page 6
Page 7
Page 9
Medical
Biofeedback:
Tulips for Tremor
Meet the
Items for sale
Advisory
another stress
fundraiser recap
IETF’s first
through
Board
reduction
and sponsor
Community
the
additions
alternative
thank you
Ambassadors
IETF
Hope through research,
awareness and support
Hope through research,
awareness and support
PO Box 14005
Lenexa, Kansas 66285-4005 U.S.A.
913.341.3880
Toll Free 888.387.3667
Fax: 913.341.1296
Email: [email protected]
Website: www.essentialtremor.org
Page 3
Use this convenient peel-off label for the membership form inside.
If the membership expiration date on your address label is August 1,
September 1, or October 1, 2007, this is the last issue of Tremor Talk you will receive.
Don’t miss your next issue — renew today! The renewal form is on page 11.
Brain tissue donations vital to finding ET cure
The gift of brain tissue is the gift of hope, advancing medical knowledge
about ET and bringing us closer to finding a cure. Direct analysis of the
shape, number, and content of nerve cells in brain tissue of people who
had ET helps researchers better understand the condition. If you want to
donate brain tissue, or want additional information about the program,
contact the ET Brain Repository at Columbia University at 212.305.8513 or
send an email to [email protected].
No patient/member conference planned
The IETF will not hold a patient/member’s conference during 2008. Of
more than 9,000 surveys in the Spring 2007 issue of Tremor Talk, less than
50 were returned to the IETF office thus demonstrating insufficient interest
to justify the expense at this time.
Tremor Talk publication changes
Because of rising postage rates, Tremor Talk will be published every four
months instead of every three beginning in 2008. The publication will
grow, however, from 12 pages to 16, and the IETF will continue to provide
quality information about living with ET as well as up-to-date news about
research. We appreciate your understanding and thank you for your
continued support.
IETF ET awareness
bracelets benefit research
Make a colorful statement and
support the “Shaking Up Awareness
About ET” campaign with the IETF’s
new green and blue silicone bracelets.
Bracelets are for sale in increments
of five with five bracelets costing $6,
which includes shipping. To order your
bracelets visit the IETF website at
www.essentialtremor.org or call the
IETF office toll-free at 1-888-387-3667.
Proceeds from the sale of the
bracelets benefit ET research, and the
bracelets can also raise awareness
about ET. Order your bracelets today
and support ET research!
Susan Robinson:
Tulips for Tremor provides
opportunity to give back
When Susan Robinson of Pittsburgh, PA, learned about the IETF’s first
national fundraiser, Tulips for Tremor, she decided she wanted to help raise
funds for an organization that had been so helpful to her family. Susan
called the IETF office and asked if she could get Tulips for Tremor order forms
to mail to a few friends — well, more than 500 friends actually.
In November 2003, Susan and her husband Jerry were at a party when
they learned from a friend about ET and the IETF. Susan explains, “I was
saying our daughter had had a problem for years shaking and that all the
doctors during her growing-up years thought she was just a nervous child.
They had ruled out Parkinson’s. They tried all kinds of medications but to no
avail. This friend told me about the IETF website and suggested I take a look.
We did so immediately and were very impressed with what we found.”
Through the IETF website, the Robinsons were able to find a “fabulous”
doctor in Pittsburgh who was able to diagnose their daughter with ET.
“We waited months for our appointment,” said Susan, “which was fine
with us because we were sure we had finally found the right place to be.
See Susan Robinson on page 10
We encourage you to
do your part in raising
awareness about ET by
calling the IETF office tollfree at 1.888.387.3667
and asking for ten copies
of The Patient Handbook.
Give them to family,
friends or colleagues
— people who have ET or
might have ET — or ask
your doctor, librarian or
pharmacist to distribute
them as needed.
Ten-million Americans
have ET. Together, we can
reach every one of them
and let them know that
there is hope!
New support groups
The IETF welcomes the new Roanoke, VA and Daytona Beach, Fl ET
support groups to the family!
tremor
talk
Son, Jay; Daughter, Lynda; Susan; Husband, Jerry
tremor talk
Tremor Talk is published by
the International Essential
Tremor Foundation.
IETF Board of Directors
Peter LeWitt, M.D.
President
Shari Finsilver
Past President
L. William Teweles
Past President
Kelly E. Lyons, Ph.D.
Vice President
Edward M. Block, Ph.D.
Secretary
Dean Cavey
Treasurer
Mark Hallett, M.D.
State Senator Terry Link
Elan D. Louis, M.D.
Celeste Null, M.S.
Russ Rosen, M.S.
W. Douglas Ward, Ph.D.
Staff
Catherine Rice, M.N.M.
Executive Director
Debbie Lovelace
Tremor Talk Editor
Marketing and Public Relations
Specialist
Dee Ragan
Marketing and Public Relations
Specialist – Events
Michael Patch
Membership Coordinator
Medical Advisory Council
Roy A. E. Bakay, M.D.
Rodger Elble, M.D.
Leslie J. Findley, T.D., M.D., FRCP
Mark Hallett, M.D.
Arif Herekar, M.D.
Joseph Jankovic, M.D.
Amos D. Korczyn, M.D., M.Sc.
Anthony E. Lang, M.D., FRCP(C)
Peter LeWitt, M.D.
Elan D. Louis, M.D.
William Ondo, M.D.
A. H. Rajput, M.D., B.D., FRCP(C)
Sara S. Salles, D.O.
Kapil D. Sethi, M.D., FRCP
Mark Stacy, M.D.
Tremor Talk is published four times a
year for people who have an interest
in essential tremor.
Please send comments,
questions, and story ideas to:
IETF
PO Box 14005
Lenexa, Kansas
66285-4005 USA
or send an email to:
[email protected]
This publication is not intended
to provide medical advice or be
a substitute for qualified medical
care. Appropriate treatment for
your condition should be obtained
from your physician. The content of
this publication offers information
to those with essential tremor. The
IETF does not endorse any product
advertised in this publication unless
otherwise stated.
page 11
page 2
Executive Director Message
The year 2007 is shaping up to
Proceeds from the purchase of these
be a banner year for the IETF, and
bracelets go to ET research, which also
hopefully, this boon to the Foundation
increases awareness about ET. Support
will equate into tangible benefits for all
ET research today!
people with ET.
If you want to participate in raising
Tulips for Tremor, the IETF’s first
awareness about ET, call the IETF office
national fundraiser, is completed and
toll-free at 1.888.387.3667 and ask for
proved to be a success in many ways.
ten copies of the Patient Handbook
Not only were more than
to give to family, friends and
2,000 bulb packages
acquaintances or to leave in
purchased, with proceeds
doctor’s offices, libraries or at
going to the IETF as
pharmacies. To date, more than
donations, but because of
2,000 handbooks have been
the generosity of several
distributed by IETF members!
member sponsors, we
Finally, if you are reading
were able to purchase
this you are probably aware
national advertising
that Tremor Talk looks a little
in publications that
different. We are very pleased
have been completely
with the changes and hope
Catherine Rice, MNM
inaccessible in the past. To
that you are too! This new look
IETF Executive Director
read a complete recap of
comes at a time of additional
Tulips for Tremor see page 6.
changes to your newsletter.
I want to take the time now to
As you probably know, postage
say a huge “Thank you!” to all those
rates rose not too long ago. The cost
people who made this first year of
of mailing each issue of Tremor Talk
Tulips for Tremor such a tremendous
increased by hundreds of dollars.
success. Not only was your assistance
Because of this, we will be printing
— be it donations or time and effort
Tremor Talk every four months instead of
— so appreciated, but it was fun and
every three months beginning in 2008.
fulfilling getting to know you!
The publication, however, will grow
Also, just to let you know, as part of
from the usual 12 pages to 16 pages.
the “Shaking Up Awareness About ET”
The IETF will continue to provide
campaign, the IETF now has attractive
quality information about living
green and blue silicone bracelets
with ET as well as up-to-date news
— printed with the slogan — available
about research. We appreciate your
with any new or renewed membership.
understanding and thank you for your
Bracelets are also available for purchase
continued support!
in increments of five at the price of
$6 for 5 bracelets. The price includes
shipping. To order, please visit our
website at www.essentialtremor.org or
call the IETF toll-free at
1.888.387.3667.
tremor talk
IETF Membership Donations
It’s easy to join the IETF or renew your membership! Just check the level, and tell us which essay packet(s) you would like to receive. Remember,
your membership fees are tax-deductible to the extent allowed by law. For your convenience, you can also join online at:www.essentialtremor.org
❒
$30 Basic Membership:
•
•
•
•
•
An essential tremor (ET) medical alert card;
Three issues of Tremor Talk, the IETF member newsletter;
Discounted rates on our other publications;
Support group access;
Information on the latest research into finding a cure for ET, and the
opportunity to participate in research projects;
❒
$50 Bronze Membership:
❒
$100 Silver Membership:
❒
❒
•
•
•
•
•
Personal notification of ET community education events in your area;
Professional representation with media, government & corporate
entities;
A tax-deductible membership fee;
The personal satisfaction of being part of a community that shares
your concern for finding better treatments and a cure for ET, and;
Blue/green “Shaking Up Awareness about ET” bracelet.
The Bronze, Silver and Gold Memberships include publications.
Check which packets you would like to receive with your
membership.
(Bronze and Silver select one packet. Gold select two packets)
Basic package plus one packet of publications.
Basic package, IETF Pen, Annual Report, plus one packet of
publications.
___ Packet 1 (Diagnosis, History & Genetic Factors)
$250 Gold Membership:
___ Packet 2 (Diet, Alternative Therapies, Exercise & Medications)
Basic package, IETF Pen, Annual Report, Online Membership and
two (2) packets of publications.
___ Packet 3 (Other Tremor Disorders)
$500 Platinum Membership:
Basic package, IETF Pen, Annual Report, Online Membership, and full set of publications.
❒
$1000 Presidents Club Membership:
Basic package, IETF Pen, Annual Report, Online Membership, full set of publications, newsletter recognition, membership in the exclusive
Presidents Club and a set of ET Patient Education Videotapes/DVDs.
Enhancements
❒
❒
Check to become an online member! For just an annual fee of $15, you can also become an online member with access to: a live
chat with an essential tremor medical specialist three times a year, past Tremor Talk issues; up-to-the-minute information on educational
events, research, medications, and much more.
Check to add a family member or friend at one-half of the normal donation! For $15 you can ensure that the people you
care about with essential tremor can also receive all the benefits of membership, while you claim the $15 tax deduction. Please provide the
following information on each person:
Name of family member of friend _______________________________________________________________________________
Their address _________________________________________________________________________________________________________
Relation to you ____________________________ Phone _____________________________ Email _______________________________
Please fill out the form below, and mail it, with your chosen membership donation to: IETF, PO Box 14005, Lenexa, KS 66285-4005.
For your convenience, place the peel-off mailing label from the back cover of Tremor Talk below. (The IETF protects all information provided in the form.
Your personal information is never sold or given to outside sources.)
Name ___________________________________________________________________________________________________
Your Address __________________________________________ City __________________________________ State _______ Zip __________________
Community education event schedule
The following locations are currently scheduled for IETF community education
events during October and November 2007. For further information on these
events or to see when your community is added, please visit the IETF webpage at
www.essentialtremor.org.
Seattle, WA – October 6
Charlottesville, VA – October 23
Louisville, KY – October 13
Hershey, PA – October 26
Sacramento, CA – October 16
Boston, MA – October 27
Spokane, WA – October 17
Las Vegas, NV – November 3
Hackensack, NY – October 20
Phone ______________________________________________________
❒ My check is enclosed (payable to the IETF)
Charge my:
Email ________________________________________________________
❒ M/C
Account holder’s name ______________________________________________
Exp. Date _____________________
❒ VISA
❒ Discover
Account No. _______________________________________________
Signature ___________________________________________________________________
Sub Totals:
Membership Donation Amount
Additional Donation
International Postage
❒ American Express
$ ___________
$ ___________
$ ___________
(Residents in Canada add $5, International add $10)
TOTAL: $ _____________________
page 10
tremor talk
Susan Robinson
continued from front cover
The doctor is a delightful woman who is extremely
knowledgeable in her field. Our grown daughter is now
on medication and doing much better. She will always
shake to some degree, but she is okay with that. She
at least now knows that she is not alone and that there
really is a reason for it.”
Susan and her daughter, Lynda, became members of
the IETF and have actively supported the organization
ever since. When Susan received the Tulips for Tremor
materials in the mail, she saw an opportunity to express
her thanks while helping other people at the same time.
“We wanted to do something as our way of saying
thank you for the IETF’s help and also wanted to
help fund more research,” explained Susan. “We are
extremely blessed to have found the Foundation and
hope that maybe we have been able to help other
people find the IETF too. I received several phone calls
from other people who received the Tulips for Tremor
packets who thanked us for letting them know about
the organization. They have someone — and sometimes
more than one person in their families — who also has
this condition and were too embarrassed to talk about it.
Now they realize they need help too.”
First national fundraiser
Susan continued, “The IETF has helped our entire
family understand more about ET. The website, the
people who work at the IETF, the referrals received
from them all have been invaluable to us. Our daughter
has since moved to San Antonio, TX, and through the
Foundation found a support group and she is now a
co-leader of that group. It has helped her tremendously
to learn how to deal with people and their reactions to
her and also in every other aspect of her life. It has been
unbelievable for us to watch her finally be able to grow
in every way.
“We think it is so important to let people know what
resources are available to all of us and where to find
them. We hope this project is a huge success for the IETF
and we know the Foundation will continue to be helpful.
We believe there are many people out there who could
benefit from the organization.”
In all, Susan’s effort in the Tulips for Tremor campaign
was responsible for raising approximately $2,800.
The IETF and the ET community say a tremendous
“Thank you!” to Susan. Her efforts are an inspiration and
a beacon of hope for everyone with ET.
page 3
tremor talk
EDITORIAL
Taking a risk, building community
When IETF staff members first began discussing doing
a national fundraiser, people told us it would be a lot of
work, it would be too difficult for only four people to
accomplish successfully, we would regret it in the end,
and we should just mail an appeal letter to our members
asking for money. People said a national fundraiser was
just too great a risk.
After thinking long and hard, we decided we needed
to take that risk. We needed to do a fundraiser – even
if it was a lot of work and would be difficult and would
not be very successful. We needed to do it because we
needed to involve the ET community in a project in
which we all could work together. We needed to bond
with our members and make new friends. We needed to
associate the IETF and ET with an image – in this case,
tulips – that is life-renewing, hopeful, and positive. We
needed to stretch ourselves beyond just putting our
hands out and asking for money from the same people
over and over and over again.
And we’re so glad we took the risk!
It has been a wonderful experience. It was a lot of
work and it did indeed stretch the abilities of four people
to an extreme. But we are so pleased we took a risk on
Tulips for Tremor. The rewards have been numerous.
For the first time, ET and the IETF received national
exposure in the media.
We had the pleasure of getting to know more
personally several members, including Holly Hein, Susan
Richardson, and Margaret Thaw, who all went above
and beyond in either selling tulips or asking friends and
family to support the fundraiser.
And we raised money to support services for people
with ET.
Most of all, we learned that taking a risk can be
very, very rewarding. It is not only the outcome of our
endeavors that hold the reward; it is the journey to that
outcome that is most fulfilling. The journey through
Tulips for Tremor was a reward unto itself.
We encourage all members of the ET community to
determine how ET is holding you back from reaching for
rewards in your life. We encourage you to make a list of
reasons why not reaching for more rewards is a good
thing because of your ET. Then we encourage you to
take a deep breath, tear up that list, and take the risk.
Go for your dreams. Take that journey and then let us
know how it turned out for you. We expect it will be as
rewarding an experience for you as Tulips for Tremor has
been for the IETF and its staff.
continued from page 6
bulbs herself to decorate the grounds of the retirement
community where she lives. Margaret’s motivation was
pure. As a person with long-standing ET, she wants
to see more “research, research, research!” With the
funds raised in Tulips for Tremor the IETF will gladly
accommodate her wish.
Holly Hein, Sacramento, CA, participated in Tulips for
Tremor by also having tulip order materials sent to her
friends so that their purchases would benefit the IETF
as well as honor her husband, Paul, who has ET. Holly
explained, “Although every one of our close friends
and family know about my husband’s condition, I
don’t think anyone had ever contributed to the cause.
The Tremor for Tulips fundraiser was a great way to
reach out to others to support IETF. Not only are they
helping to support the Foundation, but they are getting
some beautiful tulips as well. Also, ironically, tulips are
my husband’s favorite flower, which also led to my
excitement for the project.”
Catherine wished to express her, and the IETF’s,
appreciation to Susan, Margaret and Holly, and to
everyone else who worked diligently on making this a
successful launch or who participated through a personal
purchase.
“Please know that we deeply appreciate your gifts and
your personal contributions,’ said Catherine. “Without
your hard work and dedication, the huge success of this
campaign would not have been what it was. I thank you.”
Looking towards 2008, Catherine said, “We learned
a great deal about national media, sales, shipping – all
the little things that went into putting this fundraiser
together - and we are looking forward to tripling
sales next year as well as placing advertisements in
publications such as the AARP and Prevention magazines.
This thing will only grow bigger and knowledge about
ET will grow right along with it.”
The Annual Report for FY07 is now available by calling the
IETF office toll-free at 1.888.387.3667, or writing the office at
PO Box 14005, Lenexa, KS 66285. The Annual Report is also
available for viewing online at www.essentialtremor.org.
ET community benefits from additions to Medical Advisory Board
The IETF recently added four new members to our
Medical Advisory Board. They are Sara S. Salles, DO;
Kapil D. Sethi, MD; Mark A. Stacy, MD; and Ray L. Watts,
MD. In the past issue of Tremor Talk, we introduced you
to Drs. Salles and Stacy. We introduce Dr. Sethi and Dr.
Watts in this issue.
Kapil Dev Sethi, MD
Dr. Sethi earned his medical degree
at the Christian Medical College,
Ludhiana, India. He served his residency
in internal medicine at the Post Graduate
Institute of Medical Education and
Research, Chandigarh, India, where
Kapil Dev
he also underwent fellowship training
Sethi, MD
in neurology. Dr. Sethi continued his
medical education by completing a research fellowship
in neurology at the Charing Cross Group of Hospitals
and Medical School, London, United Kingdom. Dr.
Sethi is professor of neurology at the Medical College
of Georgia in Augusta, where he is also director of the
Movement Disorders Clinic and the National Parkinson
Foundation Center of Excellence.
“My goal as IETF Medical Advisory Board member will
be to encourage more bright young minds to investigate
the basic mechanisms underlying essential tremor that will
lead to better treatments in the future,” says Dr. Sethi.
Ray L. Watts, M.D.
Dr. Watts is professor and chairman of neurology and
director of Clinical Research, Parkinson’s Disease and
Movement Disorder Research Program at The University
of Alabama (UAB), Birmingham. He was valedictorian
of his medical school class at Washington University
School of Medicine in St. Louis in 1980 and completed
his internship, residency, and fellowship training at
Harvard Medical School and Massachusetts General
Hospital. Before attending UAB, Dr. Watts served a twoyear fellowship at the National Institutes of Health before
joining the faculty at Emory University where he and his
colleagues built an internationally renowned Parkinson
Disease and Movement Disorders Research and Clinical
Center.
Dr. Watts was not available for comment about his
appointment to the IETF Medical Advisory Board at press
time, and no photo was available.
page 4
tremor talk
“I first met Mike and his wife
Carol at the initial meeting of this
group,” continues Shari. “Mike was
looking for a speaker for this getacquainted meeting and I happily
agreed to drive up to speak to
the group about ET and the IETF.
H. Michael Dwan
Mike always spoke about his family,
which was growing by leaps and bounds. He was very
committed to them.”
Kelly Lyons, PhD and vice-president of the IETF
Executive Board said, “It was a pleasure to have had
the opportunity to meet and work with Mike Dwan.
He was a kind-hearted man who did so much to help
and educate persons with essential tremor. He will be
greatly missed by the IETF Executive Board and the
many people who were touched by his kindness and his
dedication to increasing awareness and helping those
with essential tremor.”
Biofeedback: another stress reduction alternative
People with ET often have difficulty finding medication
that either completely or partially controls tremor.
According to the Mayo Clinic, biofeedback might be
able to pick up the slack left by medication through “the
power of the mind.”
Biofeedback is a complementary mind-body therapy
that uses a variety of monitoring procedures and
equipment. Biofeedback specialists teach people how to
control certain involuntary body responses, such as brain
activity, blood pressure, muscle tension, and heart rate,
by recognizing how the body feels during these physical
responses and the conditions that produce the stress
that brings on these responses.
Research has shown that biofeedback can be beneficial
in treating more than 150 medical conditions, including ET.
Biofeedback training takes place in physical therapy
clinics and hospitals and typically lasts from 30 to 60
minutes. The specialist applies electrical sensors that
monitor physiological stress to various parts of the body.
The information gathered is then presented to the
patient through beeping sounds or flashing lights. With
this feedback, the patient learns to associate her or his
body’s responses with physical functions.
tremor talk
These items are now available for sale through the IETF
In memory of H. Michael Dwan
H. Michael Dwan, former IETF executive board
member and support group leader, died June 2, 2007 at
his home in Bay City, MI, of cancer.
Michael joined the IETF in 2001 and shortly thereafter
formed an essential tremor support group that met in
his law office in Saginaw, MI. In March 2004, Michael
joined the IETF executive board where he served for
two years.
“Michael had a real passion for the IETF and wanted
to do everything he could to help people with ET, “ said
Catherine Rice, IETF executive director. “He was always
wonderful to work with – very generous in every way.”
Former IETF president Shari Finsilver shared her
memories. “Mike was a very special person. He was so
involved and committed with different organizations,
one of which was the IETF. He worked so hard to create
a support group in the Bay City/Saginaw area. In doing
so, he helped many people with tremor learn more
about ET and better cope with their situation.
page 9
Once this occurs, the patient learns to produce
positive physical changes through relaxation. The goal
of biofeedback is to help patients recognize stressors
and the physical responses they produce and then use
positive physical responses without the assistance of the
therapist or technology.
Biofeedback has much to offer people with ET
by possibly:
• Reducing the need for medication.
• Helping control tremor that does not respond
to current medication through stress-control
techniques.
• Putting the patient more in charge of healing by
providing measurable feedback and allowing the
patient to monitor progress.
• Reducing medical costs.
If you are interested in learning more about biofeedback,
first talk to your doctor to make sure it can meet your
medical needs.
To find a qualified biofeedback specialist check the
Biofeedback Certification Institute of America website at
www.bcia.org or call toll-free 866-908-8713 for a listing
of certified therapists in your area. Many certified
biofeedback specialists are also physical therapists. Be sure
to ask for references and find out if the specialist works
with ET patients.
“Patience and perseverance have a magical effect before which
difficulties disappear and obstacles vanish.”
John Quincy Adams
IETF offered exclusive right to market
IBM Assistive Mouse Adapter!
Essential Tremor: The Facts
Regularly $184.00
NOW only through the IETF -
Oxford University Press
Paperback, 224 pages
By Mark Plumb and Peter Bain
$154.95
Price includes shipping. Please allow 2 to 3 weeks for delivery.
IBM’s Assistive Mouse
Adapter enables people
with ET of the hands to
have completely normal
use of the personal
computer. It filters out
the shaking movements
of the hand in a similar
way as the image
stabilizing systems of some cameras. The device is
designed to work with any operating system —
requires no additional software — is simply plugged
in — switches on and off — is adjustable based upon
tremor severity.
A comprehensive guide to
understanding ET. Written
by a geneticist and a leading
movement disorders specialist
with 50 years experience living
with ET. Outlines the causes,
treatments and methods of
coping with day-to-day situations.
$15.95
Regularly $19.95
Price includes shipping and handling.
At last! A book for people with
essential tremor by a person who has
essential tremor.
I Can’t Stop Shaking:
More than 10 Million People Suffer
with Essential Tremor
Essential Tremor
Awareness Bracelets now available!
Proceeds go to ET research. Purchase your attractive
blue/green “Shaking Up
Awareness About ET”
bracelet now!
(Available in
increments of 5)
By Sandy Kamen Wiseniewski
Includes personal accounts of
living with ET, and coping tips.
$19.95
Order your copy today!
Price includes shipping and handling.
5 for $6.00
Price includes shipping and handling.
ORDER FORM
Item Description
Quantity
Price Each
Sub Total
IBM’s Assistive Mouse Adapter
____________
$154.95
$_____________
Essential Tremor: The Facts
____________
$15.95
$_____________
I Can’t Stop Shaking
____________
$19.95
$_____________
Essential Tremor Awareness Bracelets
group(s)
of 5
____________
$6.00 (for 5)
$_____________
Mail this order form and
your payment to:
IETF
PO Box 14005
Lenexa, KS 66285-4005
U.S.A.
TOTAL COST $_____________
Name _____________________________________________________ Phone ________________________________________
Address ____________________________________ City ____________________________________ State _______ ZIP _________________
❒ Enclosed is my check (made out to the IETF)
Please charge my
❒ VISA ❒ MasterCard ❒ American Express ❒ Discover
Expiration Date ________ Signature _________________________________________
page 8
tremor talk
Honoraria and Memorials
Thank you to everyone
who has established
memorials and contributed
funds to honor loved
ones on behalf of the IETF
this year. We use these
contributions to support
public awareness about,
and research into, essential
tremor. Your help is greatly
appreciated. (Honoraria
or Memorials listed in
uppercase, donors listed in
italics.)
Honoraria
KRISTIN MOTT
Mrs. Eleanore Bredvold
JOAN MARIE BARRINGER
Ms. Sheron Jones
ALL ET SUFFERERS
Ms. Helen Berky
BRUCE MILEN
Mr. & Mrs. Barry Silverman
Ms. Denise Kort
JUDY A. MILLER
Mr. & Mrs. Harold Rosenow
LOIS IRENE TUCK
Mr. Bruce C. Tuck
NEIL WALDMAN
Mr. Ed Waldman
JEFF RYAN
Medtronic Corporation
EE SHACKELFORD
Ms. Pat Shackelford
EDGAR & LEA SEATON
50TH ANNIVERSARY
Ms. Gloria Oertie
AMY FRIEDLANDER
Ms. Carole R. Friedlander
SHARI FINSILVER
Rabbi Jennifer A. Tisdale
Ms. Pamela Nadler
Ms. Frances J. Finsilver
BARBARA & MICHAEL HOROWITZ
Mr. & Mrs. Stan & Shari Finsilver
SHELDON STERN
Mr. & Mrs. Stan & Shari Finsilver
EZRA MILES COHEN
Mr. & Mrs. Stan & Shari Finsilver
ANDRIE CUMMINGS
Ms. Phoebe Lou Doughty
SHARON & KATHARINE SPRIGLE
Ms. Joan Adair
STEPHEN S. BARNES
Mrs. Louise Barnes
Memorials
JEAN DAVID
Mr. and Mrs. Jack Cooper
RICH HILLMAN
Mr. Patrick Williams
GLADYS BANCOSKY
Ms. Mary Ann Parkman
JEAN ROBERT LATHAM
Mrs. Martha L. Bass
VINCENT ESPOSITO
Ms. Margaret Esposito
CHARLOTTE WEINSTEIN
Mr. & Mrs. Barry Roberts
MARILYN RACHMIEL
Mr. & Mrs. Barry Roberts
MURIEL GRABER
Mr. & Mrs. Mark Lyman
OPAL GROGAN
Ms. Jane Bierdeman Fike
MAX & LILLIAN BAER
Mrs. Barbara J. Yaffe
AMOS COLEMAN
Ms. Susie Kostecka
SHARON SNAVELY
Mr. & Mrs. John Cahill
SYLVIA MURZIN LIPSON
Mr. Stanley Lipson
FRANCES M. STAMBAUGH
Mr. Charles H. Damsel
ELEANOR CASTLEMAN
Mr. & Mrs. Barry Roberts
SIDNEY KORT
Mr. Harold Kort
BILL MCKINLEY
Mr. and Mrs. Greg Grafft
BRADLEY HUTCHEON
Mr. Michael McQuillen
MARY GRABOSKI
Mr. Byron Scott
DAVID L. EHRICK
Ms. N. Romelle Ehrick
RUTH HAGLAGE
Mr. Richard A. Haglage
KENNETH GREEN
Ms. Ida E. Green
BETTY SUE FINDLAY
Ms. Christine S. Monett
EDWARD BENTZ
Mr. and Mrs. Larry Wolgast
Ms. Zeena Abdulahad
Ms. Ludmilla Trigos
E. CONTANCE HATCH
Mr. & Mrs. William Garner
Ms. Elizabeth A. Schuck
MARIAN DURAY
Mr. and Mrs. Philip J. Mullaney
DOROTHY WILSON
Mr. & Mrs. John W. Wilson
Mr. & Mrs. William Cook
RICHARD RELLO
Mr. James Franzosa
LOUIS L. OTTO
Mrs. Dorothy E. Otto
moving forward in the
mission of providing global
educational information,
services and support to
people with ET.
Thank you!
Ms. Judy Atkinson
Mr. John D Barkley
Mr. Joe Barbee
Ms. Eleanor Bredvold
Mr. Paul Broyhill
tremor talk
Hospitals host IETF community education events
DIANE KAYE
Ms. Frances J. Finsilver
N.A. VAUGHTER
Mr. David C. Vaughter
RUSSELL SCHAFFER
Mrs. Eleanor Schaffer
BENJAMIN LEVINE
Ms. Denise Kort
BERNICE COHEN
Mr. Chester Cohen
PAULINE VAINSTEIN
Ms. Ellen Shapiro
WANDA FELLMAN
Ms. Marianne Drengson
BILL MCKINLEY
Ms. Mary Zarybnisky
CAROLINE SCHWARTZ
Ms. Nancy Beckermedina
Mr. Lupe Gonzales
Ms. Cynthia A. Singh
Mr. William Halsell
Ms. Stephanie Batson
American College of Emergency Physicians
Ms. Angela Franklin
Mr. Marshall Gardner
Ms. Marta Foster
Dallas Bead Society
WAYNE D. THOMPKINS
Mr. & Mrs. Dale Schnoor
Ms. Billie Sturgis
Mr. & Mrs. Cecil E. Walker
Ms. Betty N. Baker
Mr. George Dimech
Mr. Tom Tompkins
Mr. & Mrs. N. Robert Day
Ms. Marian Chase
Mr. & Mrs. Holly Wagner
Ms. Kathlyn Thompkins
GLADYS KIERSTEAD
Ms. Doris Kinney
Ms. Kandra Hahn
Mr. Curtis Edward Maynard
Ms. Bonnie K. Meltvedt
Mr. & Mrs. Kurt Prai
Mr. & Mrs. Robert Lee Albrecht
Mr. & Melvin Simpson
Ms. Jacque R. Rank
Mr. & Mrs. Gil Rank
Ms. Zoya L Zeman
Mr. Wayne E. Simpson
Mr. and Mrs. Timothy A. Guethler
ANTHONY E. DESANCTIS
Hartstring, LLC
Mr. & Mrs. Jim O’Malley
Mr. & Mrs. Theodore Koenig
Mr. & Mrs. Sebastian Calvano
Mr. & Mrs. Albert M. Sardella
Mr. & Mrs. Achille Vicoli
Academy of Notre Dame De Namur
Mr. & Mrs. Kevin H. Drayer
ReMax
Ms. Carol Beck
Ms. Joy Renfrew
Retail Advisory Group
Mr. & Mrs. Joe Folz
JUNE MURPHY
Mr. & Mrs. Gerald Eaton
Mr. & Mrs. Arthur Miller
Ms. Bobbi A. Humbracht
Mr. & Mrs. Joseph Leonardo
Ms. Elizabeth A. Fischer
Mr. & Mrs. Leonard Doom
Mr. & Mrs. James E. Atkinson
Mr. & Mrs. Elmer Lindback
Ms. Sandra Cramer
Ms. Sondra K. Kuhn
Mr. Edward F. Murphy
Mr. Nathalia Fischer
Mr. & Mrs. Edward S. Elles
CAROL EPSTEIN YOUNG
Mr. Leonard Epstein
CHARLES H. O’BRIAN
Ms. Lela O’Brian
WILLIAM MARTIN
Mrs. Mary M. Chappuis
MARIE V. ALLENDINGER
Mrs. Doris M. Danekind
RAY CUMBIE
Ms. Colleen Cumbie
LORI KLINGHER
Ms. Janice Polisner
FRANCIS I. MILLER
Mr. Kit Walther
Ms. Deborah Stewart
ROY A. GROSS
Ms. Rose Hedrick
Mr. & Mrs. John Konscak
Mr. & Mrs. Bob Packard
WELDON SHIELDS
Mrs. Marleta Crim
ROBERT HENDRICK
Mr. Joe D. Barbee
MADELINE JOHNSON
Mr. Joe D. Barbee
VELMA GAFFNEY
Ms. Juliet Dorn Clopton
ANNE MCINNIS
Mr. & Mrs. Claude S. Bridges
SYLVIA ASH
Ms. Roslyn M. Meyer
LOUIS L. OTTO
Mrs. Carol L. Moody
STEPHEN JOHNSON
Ms. Mary B. Johnson
MOM LUELLA
Ms. Helen Kennelly
ROBERT B. LOEW
Mr. & Mrs. Peter Carter
GRACE RISTOW
Mr. & Mrs. Charles Diebele
DOROTHY WILSON
Mr. Richard H. Loomis
Ms. Doris Silver Durr
Mr. & Mrs. Melvin Rosen
Mr. & Mrs. Robert Rice
FRANK CASTLEMAN
Ms. Susan Roberts
GLADYS KIERSTEAD
Mr. & Mrs. Scott Norby
Mr. & Mrs. Zane Gee
Mr. & Mrs. Truman Berry
DON WESTOFF
Mr. & Mrs. Bill Myers
ELEANOR SILK
Ms. Susan Roberts
Ms. Lillian Courtheoux
Mr. Richard Courtheoux
Mrs. Judith Farrell-Booth
Mr. & Mrs. Stan & Shari Finsilver
Ms. Anna Fischer
Mr. & Mrs. Richard Frinier
Ms. Juanita Froelich
Mr. Robert G. Grahamslaw
Ms. Carol Gruen
Mr. & Mrs. Theodore T. Leber
Mr. John G. Mancino
Mr. Richard Morano
Ms. Elizabeth McQuale
Ms. Stephanie Mendel
Mr. & Mrs. Herbert Myers
Mrs. Rosemary W. Nothwanger
Mrs. Joan Robbins
Mr. & Mrs. Roland Pohlman
Mrs. Susan Robinson
Mr. & Mrs. Alan Spoon
Mrs. Joan C. Stearns
Mr. William L. Teweles
Ms. Margaret B. Thaw
Mr. James A. Thomas
Dr. & Mrs. Douglas Ward
Mrs. Leah R. Wickham
Presidents Club members
For more information
about the Presidents Club,
call IETF Executive Director,
Catherine Rice, toll-free at
1-888-387-3667.
The IETF would like to
recognize and thank the
members of the Presidents
Club. Without their valuable
support and leadership,
the IETF would not be
page 5
The following were hospitals and/or physicians who
hosted IETF community education events, during the third
quarter of 2007.
Peter A. Pahapill, MD is a neurosurgeon at Tri State
Neurological Surgeons, Erie, PA. No photo of Dr. Pahapill
was available at press time.
Fresno, CA – St. Agnes Medical Center
Saint Agnes Medical Center, Fresno, CA, is the trusted
health partner in Central California through its unrelenting
pursuit of excellence. To find a physician visit its website at
www.samc.com or call 559-450-3000.
Robert L. Calmes, MD is a neurologist in private practice
and is a sub-investigator at Margolin Brain Institute in Fresno,
CA. No photo of Dr. Calmes was available at press time.
Michael Dogali, MD is a neurosurgeon in private practice in
Fresno, CA. No photo of Dr. Dogali was available at press time.
Omaha, NE – Bergen Mercy Medical Center
Bergan Mercy Medical Center is part of Alegent Health,
one of the most preferred healthcare systems in Nebraska.
To find a physician or to learn more about Bergen Mercy
and the other facilities of Alegent Health, visit their website
at www.alegent.com.
David A. Franco, MD is a
neurologist in private practice
at the Indian Hills Medical
Plaza, Omaha, NE.
Stephen E. Doran, MD is
a neurosurgeon at Midwest
David A. Franco,
Stephen E.
Neurosurgery, Omaha, NE.
San Rafael, CA
Jill L. Ostrem, MD is
an assistant professor of
neurology, University of
California San Francisco and
neurologist specializing in
movement disorders at The
Jill L. Ostrem, MD Paul S. Larson, MD
San Francisco VA Medical
Center.
Paul S. Larson, MD is an assistant professor in residence,
principle investigator, and neurosurgeon at The University
of California in San Francisco.
Burlington, VT – Fletcher Allen Health Care
Fletcher Allen Health Care is both a community hospital
and, in partnership with the University of Vermont,
the state’s academic health center. Fletcher Allen offers
comprehensive services for all health care needs. To find a
physician visit its website at www.fahc.org or call
802-847-0000.
James T. Boyd, MD is an assistant professor of neurology
at the University of Vermont, Department
of Neurology and is a staff neurologist at
Fletcher Allen Health Care, Burlington, VT. No
photo of Dr Boyd was available at press time.
Paul L. Penar, MD is an associate professor
of neurosurgery and associate professor
pharmacology, University of Vermont
College of Medicine, Burlington, VT.
Paul L. Penar, MD
Houston, TX
Joohi Jimenez-Shahed, MD is an assistant
professor of neurology at Baylor College
of Medicine, Houston, TX and is a clinical
associate in their movement disorders clinic.
Richard Simpson, MD, PhD is a neurosurgeon,
Methodist Neurological Institute, Department
of Neurosurgery. No photo of Dr. Simpson was
available at press time.
Joohi JimenezShahed, MD
Erie, PA
Thomas D. Skelly, III, CRNP is an Adult/Actute Care Nurse
practitioner at Northshore Clinical Associates, Erie, PA. No
photo of Skelly was available at press time.
MD
Doran, MD
Colorado Springs, CO –
Penrose – St. Francis Health Center
Olga Klepitskaya, MD is a neurologist in private practice
at University Physicians, Inc., Aurora, CO. No photo of Dr.
Klepitskaya was available at press time.
Morgantown, WV
Cathrin Buetefisch, MD
is a neurologist specializing
in movement disorders at
the Robert C. Byrd Health
Science Center,
Morgantown, WV.
Cathrin
Donald Whiting,
Donald Whiting, MD
Buetefisch, MD
MD
is a neurosurgeon at The
Movement Disorder and Spasticity Center, Washington, PA.
Salt Lake City, UT
Jeffrey Wagner, MD is a clinical assistant
professor at The University of Utah medical
school and is a neurologist in private
practice, Salt Lake City, UT. No photo of Dr.
Wagner was available at press time.
Paul House, MD is an assistant professor of Paul House, MD
surgery and practicing neurosurgeon at the
University Hospitals and Clinics, Salt Lake City, UT.
Des Plaines, IL
Cindy Zadikoff, MD
is Assistant Professor of
Neurology at Northwestern
University’s Feinberg School
of Medicine, and part of the
multidisciplinary team at
Cindy Zadikoff,
Joshua Rosenow,
MD
MD
the Parkinson’s Disease and
Movement Disorders Center
at Northwestern University, Chicago, IL.
Joshua Rosenow, MD is the director of functional
neurosurgery at Northwestern University’s Feinberg
School of Medicine Department of Neurosurgery and at
Northwestern Memorial Hospital, Chicago, IL.
page 6
tremor talk
page 7
tremor talk
First national fundraiser a huge success!
Meet the IETF’s first Community Ambassadors
The IETF’s first national fundraiser, Tulips for Tremor,
not only exceeded expectations in tulip sales but in
money raised for awareness and research. Tulips for
Tremor grossed $51,672 through tulip sales, donations
and sponsorships.
Included within this total was money raised through
Tulips for Tremor sponsorships totaling $24,550. This
money was used to purchase national advertising in
US News and World Report as well as Reader’s Digest
Large Print. For the first time the IETF was able to
communicate from national platforms. (See the list of
Tulips for Tremor sponsors on this page.)
Several ET support groups took part in selling tulip
bulbs and were responsible for raising a total of $2,055.
Of this total, $736 was raised by the Cincinnati/
Dayton, OH ET Support Group lead by Norma Doherty.
Individually, within this group, Arlene and Russ Rosen
raised $486 and Norma was responsible for bringing in
$250.00. In appreciation, this support group will receive
$300 — for group and individual efforts — to be used
for local ET projects and services.
In addition, three individuals — Susan Robinson,
Margaret Thaw, and Holly Hein — stood out from the
After weeks of reading resumes and conducting phone
and personal interviews, the IETF is proud to introduce
our first Community Ambassadors: Dr. Preston Boggess,
Copper Hill, VA; Dr. Wayne J. Dubner, Alpharetta, GA;
Peter M. Muller, Centreville, VA; Joan Swinson Robbins,
Stuart, FL; and, Betty Ann Schwarz, Katy, TX.
Ambassadors will work within their communities in
activities that support the IETF mission of assisting those
affected by ET, raising awareness about the condition,
and funding ET research.
crowd in fundraising
efforts and were
responsible for
more than $3,000
in total sales.
Susan Robinson,
Pittsburgh, PA, called
the IETF one day
wanting her friends
to receive the Tulips
for Tremor mailing.
(See Susan’s story on
the front page of
this issue.)
Between Susan
and 58 of her friends,
approximately $2,800
was raised! According to Catherine Rice, IETF executive
director, Susan and her friends were “an integral part
of this campaign and a ‘“thank you”’ will never be
enough.”
Margaret Thaw, Bryn Mawr, PA, believed in the
fundraiser so much she purchased 50 packages of tulip
See First national fundraiser on page 10
Tulips for Tremor sponsors
The IETF thanks everyone who sponsored Tulips for
Tremor through generous donations. As a result of
these caring people, we raised $25,500 to market the
fundraiser and to raise awareness about ET. With these
Tulips for Tremor
Sponsorship List
(August 30, 2007)
ESTATE SPONSORSHIP
$5,000 and Above
Ms. Gertrude Hankin
Mr. & Mrs. Roland Pohlman
COTTAGE
SPONSORSHIP
$2,500 to $4,999
Mr. Paul H. Broyhill
TERRACE SPONSORSHIP
$1,000 to $2,499
Ms. Ricki Bell
Ms. Lillian Courtheoux
Mr. & Mrs. Davide Friedman
PATIO SPONSORSHIP
$500 to $999
Mr. & Mrs. David Berryhill
Mr. & Mrs. John Cakebread
Mrs. Margaret Dias
Ms. Bonnie Goldberg
Mr. & Mrs. William Ivine
Mr. & Mrs. Robert Kribs
Mr. & Mrs. Curtis Larmon
Mr. & Mrs. Russ Rosen
Mr. Alvin Sargent
Mr. Byron Scott
Mrs. Margaret Smartt
Ms. Mary Stevenson
Mr. Philip E. Wagner
Dr. & Mrs. Douglas Ward
Mr. & Mrs. Gary Winterrowd
donations, we placed advertisements for Tulips for Tremor
in US News and World Report and Reader’s Digest Large
Print Edition. This national exposure would not have
been possible without the partnership of our sponsors.
FLOWERBOX
SPONSORSHIP
$1 to $499
Mr. & Mrs. Thomas Allison
Mr. Eddie Ames
Mr. Bill Claflin
Mrs. Joan Dekan
Mr. Eley Denson
Ms. Margaret Eberle
Mr. & Mrs. Joseph Hanna
Mr. & Mrs. Mark Honeyman
Ms. Joyce Keller
Mr. & Mrs. Wilbur Kennett
Ms. Marlene Lang
Dr. Kent D. Lawson
Mr. & Mrs. Taylor McElroy
Ms. Texanna McGinnis
Mr. Richard Miller
Mr. & Mrs. Donald Neff
Ms. Margaret Packham
Mr. & Mrs. Mort Reisfield
Mr. & Mrs. Dearl Sweeney
Mr. & Mrs. Dana Ross
Mr. James Rich
Ms. Brenda Sasser
Mr. and Mrs. Richard Schoofs
Mr. & Mrs.Wilbert Thee
Mr. & Mrs. William Todt
Thank you for your
support! Without
these partnerships,
Tulips for Tremor would
not have received the
nationwide media exposure
that will increase awareness
about ET.
Preston Boggess, MD
Preston recently retired from
private medical practice in pediatrics
and is a professor emeritus of
pediatrics at the University of
Virginia. In addition, he is an
IETF Support Group leader and
coordinator of support groups in the
western Virginia area.
Asked why he applied for the
Ambassador Program, Preston
Preston Boggess,
MD
replied, “I applied in order to continue
my efforts to create a network of ET
support groups in Virginia (three new groups in the past
year). In addition, I wish to increase awareness of ET
among health professionals and among their patients.
Working under the banner of the IETF will ensure greater
success.
“I have had ET since the age of 16. Working with the
IETF, my tremor will be an asset for the first time in my
life. Thank you!”
Wayne J. Dubner, DPM
Wayne recently left his private
practice as a podiatrist in Atlanta.
GA. He currently serves as a
volunteer diabetes educator, and he
feels strongly about becoming an
IETF Community Ambassador.
“I was diagnosed with ET in May
2006 when I was 41. My tremor
Wayne J. Dubner,
had a sudden onset. In the span of
DPM
two weeks, I left my job as a podiatrist
and lost my identity as a healthcare
professional. Being a doctor had fulfilled my strong drive
to help others, and I found the transition from doctor to
patient difficult. I applied for the Ambassador position
because I saw an opportunity to continue serving others
and to educate healthcare providers about ET.
“I feel strongly that the city of Atlanta and
surrounding areas have pressing needs in establishing
support groups, increasing community awareness of ET,
providing in-depth and up-to-date information about ET
to primary care physicians, and establishing the IETF as
the primary resource for information about ET.”
Peter M. Muller
Peter is a senior management
consultant for Strategic Edge,
a healthcare communications
company, in Burke, VA. Having ET
for 33 years, and being unaware of
what it was, Peter says that he wants
“to do anything I can to increase
awareness of it.”
Specifically, Peter wants to increase
awareness of ET throughout the
Peter M. Muller
federal government, which he hopes
could lead to increased funding for research. “Ultimately,
I’d like to see that increased funding going to research
for better treatments for ET.”
Joan Swinson Robbins
Joan is retired from the financial
services industry and is a former
IETF Support Group leader in West
Palm Beach, FL. Joan defines her
goals as an ambassador as furthering
the goals of the IETF by providing
educational material especially to
newly diagnosed people, attaining
funds for research, encouraging
support groups, establishing a network
of contacts concerned about ET, and
increasing awareness.
Joan Swinson
Robbins
Betty Ann Schwarz
Betty is a retired teacher and
educational diagnostician. Asked
why she applied for the Ambassador
Program, she said, “I saw it as an
opportunity to discuss ET with
the public in a more authoritative
manner. By being associated with
the Foundation, I feel that the
message will have a great deal more
Betty Ann Schwarz
validity. My main goal is to educate
the public with the facts of ET, to give those afflicted
with the tremor more information about their condition,
and to form support groups to let them know they are
not alone. Also, it is my desire to give those not afflicted
with tremor more information and help them not make
assumptions about people who have tremor. Eventually,
I hope to instill the desire for research that will enable us
to find a cure for a disease that is far from benign.”