The Association for Frontotemporal Degeneration
n
Volume IX, Issue 1: Spring 2012
Volume IX, Issue 1
Spring 2012
The Evolving Landscape of FTD
A message from Marsel Mesulam, MD, incoming chair of AFTD’s Medical Advisory Council
T
here was a time when diseases associated with
frontotemporal lobar degeneration (FTLD) were
considered rare and unworthy of serious research.
Times have changed. Although the ultimate goal of discovering
effective medical treatment remains elusive, critical milestones
are being reached with increasing frequency. Diagnostic
accuracy has improved, public advocacy has elicited positive
responses, caregivers have gained access to enlightened
educational resources, and the basic science of FTLD is
advancing in leaps and bounds. Many of these achievements
have been covered in previous issues of this newsletter. My
goal here is to briefly highlight some of the most current
developments that are likely to shape clinical care and basic
research related to FTLD in the near future.
New Gene on the Scene
As announced in the last issue of this newsletter, a new
genetic cause has been discovered for ALS, bvFTD and PPA.
Inside This Issue
Spotlight On
Linda Nee............................... 2
News Briefs................................. 2
Brain Donation . ......................... 3
Drug Discovery Grantees............ 5
Donations................................ 6-7
CME Course at Columbia............ 7
Caregiving Diversity.................... 8
AFTD’s HelpLine.......................... 9
Families & FTD Education........... 9
Awareness/Advocacy............. 10
The AFTD-Team........................ 11
Investigators throughout
the world are refining
the
clinical,
imaging
and
neuropathologic
understanding of patients
and families with mutations
in this gene. The new gene,
C9ORF72, may turn out to
be the most common cause
of familial FTLD. The
identification of diseasecausing genes is important
because it opens new
avenues for drug discovery
and early diagnosis, even in
patients who do not have
the genetic form of the Dr. Marsel Mesulam
(see Landscape, page 4)
Northwestern University
AFTD Education Conference & Annual
Meeting - Join Us in Atlanta on April 27
O
n Friday, April 27, AFTD invites FTD patients and caregivers to attend our
education conference and annual meeting in Atlanta, GA.
This year, AFTD is proud to partner with Emory University to offer an informative
day of support and connections. Highlights include: an update on medical research
by Dr. William Hu, assistant professor of neurology at Emory, and a keynote
address by Tim Langmaid, senior medical editor at CNN. In addition to breakouts
focusing on different stages of the journey, for the first time, there will be a brief
session geared specifically for persons diagnosed with FTD and an opportunity to
get involved with regional advocacy.
The conference will be held at the Westin Buckhead in Atlanta. A block of hotel rooms
will be held the name “AFTD Meeting” until April 5th. Please visit AFTD’s website for
online registration and complete details about the Atlanta conference.
2
The Association for Frontotemporal Degeneration
n
Volume IX, Issue 1: Spring 2012
Spotlight On...Linda Nee, AFTD Board of Directors
A
s a 22-year-old with a degree in sociology from Russell
Sage College in New York, Linda Nee knew that she
wanted to work with people. Fresh out of school, she
worked as a case aide for the New York Neurological Institute
in the Vanderbilt Clinic.
After receiving a graduate degree from Virginia Commonwealth
University, Linda landed a job with the National Institutes
of Health (NIH) as a social worker in their
neurosurgery unit. In 1974, Linda, now a
Licensed Certified Clinical Social Worker,
switched to primarily research social work and
began studying families for genetic purposes.
tree, comprised of squares for men and circles for women, that
tell a story about disease. An “informative” pedigree would
include several generations of affected individuals and autopsy
confirmation of diagnosis.
For the families who participate in research, their reward may
be knowing that they are contributing to something much
larger than themselves or even their own family.
“Hundreds of DNA samples taken by
research teams that I have been a part of are
being stored with the Coriell Institute for
Medical Research in Camden, NJ,” said Linda.
“These samples are available to researchers
around the world for their studies on myriad
diseases.”
“My work and experience has been
fascinating…I’ve always been curious about
what happens in the brain,” said Linda. “I’ve
been exposed to many neurological disorders.
Before joining the AFTD Board of Directors
Linda
Nee
I’ve studied families with Tourette syndrome,
in 2011, Linda served on AFTD’s Medical
ADHD, ADD, Parkinson’s, several types of dementia
Advisory Council, on the Task Force for Respite Care
including FTD and Alzheimer’s and disorders not yet named,” for Families and the Task Force for Families with Children. As
she said.
a board member, Linda’s been impressed with what she’s seen.
The most rewarding aspect of Linda’s job as a research social
worker has been creating informative pedigrees. A pedigree
could show a pattern of inheritance for a specific condition,
usually represented graphically. Pedigrees are a kind of family
“The AFTD Board is very committed. People are focused on
a national level--giving out grants, helping to advance research,
aiding financially to further the cause--it’s really an organization
on the move toward big things.”
AFTD News Briefs
Register Today: AFTD’s Caregiver
Conference and Annual Meeting will
be held in Atlanta on April 27, 2012.
Visit AFTD’s website for details!
during the last quarter earned AFTD
$561! Thanks so much to those who
have already applied for a card.
The 8th International Conference
on FTD will be held Sept. 5-7, 2012 in
Manchester, England. Visit the website
at www.ftd2012.org for details.
There are new FTD support groups
in the following locations: Gainesville,
FL; Dallas, TX and Annandale, VA.
Check AFTD’s website for a complete
listing of support groups.
Turn everyday purchases into a
meaningful gift to AFTD! AFTD has
teamed up with Capital One to offer
an AFTD credit card--a percentage
of each purchase made with the card
will be donated to AFTD. Visit the
“donate” page of the website for
program details. The purchases made
On May 20, two exciting fundraisers
benefitting AFTD will take place. The
3rd annual Scoot for Scooter walk/
run will be held in Mt. Airy, MD, as well
as a 10-mile & 5K walk/run in King
of Prussia, PA. For information on
participating in either of these walks,
send an email to [email protected].
Request for Proposals: AFTD and
the Alzheimer’s Drug Discovery
Foundation (ADDF) have partnered
to offer one-year grants in the field of
FTD research. For complete details of
the RFP, visit AFTD’s website.
AFTD has recently updated the
webpage containing resources for
Families with Children and Teens. This
page has several new and updated links.
Look for AFTD’s newest resource
in late April, What About the Kids?
Frontotemporal Degneration: A Booklet for
Families with Young Children and Teens,
which was created by AFTD’s Task
Force on Families.
www.theaftd.org
The Association for Frontotemporal Degeneration
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Volume IX, Issue 1: Spring 2012
3
Published Study Identifies Obstacles to Brain Donation
F
amily caregivers of people with frontotemporal
initiates the discussion; who is involved in the decision;
degeneration (FTD) have a strong desire to participate
the motivation for participating; lack of communication or
in medical research, but several specific obstacles get in
details about the brain donation procedure; and more general
the way. This is the finding of a recently published study by
issues that may act as barriers to research participation.
the Association for Frontotemporal
Families recognize the importance of
Degeneration (AFTD) and the
“The
tenor
of
the
caregiver’s
brain donation as a way to confirm
Education Core of the Indiana
diagnosis and contribute to advances
overall experience can
Alzheimer Disease Center (IADC).
in understanding and care for future
influence the way families and
The study, “FTD Caregivers and
patients. However, the lack of specific
researchers interact and affect
Researchers: Partnering for Brain
knowledge about the procedure and
the
trust
and
rapport
needed
Donation,” was funded by a grant
the unique challenges of coping
from the National Institutes of
with this rare neurodegenerative
to approach sensitive subjects
Health Partners in Research program
disease contribute to obstacles in the
such as brain donation.”
and published in the September
collaboration between researchers
2011 issue of the American Journal of
and families.
--Susan Dickinson, co-author
Alzheimer Disease and Other Dementias.
and Executive Director of AFTD “We found that the frustration and
Prior to this study, there had been
isolation many families feel in coping
a handful of studies published that
with FTD remains a great challenge.
investigated caregiver attitudes toward brain donation
People really needed to share their feelings with others who
in Alzheimer’s disease. This project was prompted by
understood. The tenor of the caregiver’s overall experience
differences in the FTD family experience (frequency of
can influence the way families and researchers interact and
misdiagnosis and FTD as primarily a young-onset disorder)
affect the trust and rapport needed to approach sensitive
and the importance of medical research to furthering
subjects such as brain donation,” said Dickinson.
understanding of the diseases.
The study showed that the research partnership is enhanced
“We knew anecdotally that both families and researchers
when it reflects an understanding of the caregiver experience
were frustrated by the lack of successful participation
in things such as: sensitivity in when and how to approach
in donation programs,” said Susan Dickinson, executive
the subject; whether a positive relationship has been
director of AFTD, “and saw an opportunity to define the
established with the clinical team; individual family traditions
challenges at work.”
and dynamics; and the need for recurrent opportunities for a
family to ask questions and absorb complicated information
A total of 30 caregivers of people with FTD participated
over time.
in focus group discussions held in Philadelphia, Boston and
Indianapolis. They responded to a series of semi-structured
The study suggested several follow-up steps that may facilitate
interview questions that asked about caregivers’ experience
research participation. AFTD is currently developing
with medical research, understanding of brain donation
educational materials for families based on the study that
and its importance, and effectiveness of communication
will provide details about brain donation (where, what,
with researchers. Dickinson
when, how) and information that addresses the positions
facilitated the discussions
of major religious faiths on organ donation, including brain
with co-investigator Mary
donation. A companion piece for professionals will outline
G. Austrom, Ph.D., IADC
aspects of the caregiver experience that influence research
education core director.
participation. These materials will be available on AFTD’s
website this summer.
Information from the focus
groups was analyzed and revealed
The NIH Partners in Research projects were funded to proseven prominent themes related
mote collaboration between community partner agencies
to brain donation: an interest
and academic researchers. This project was the only one
and willingness to participate in
among the 38 funded that was initiated by the community
brain donation, but lack of knowledge about opportunities;
partner – AFTD, and is the organization’s first original rewhen the issue is initially raised with the caregiver; who
search to be published in a scientific journal.
4
The Association for Frontotemporal Degeneration
Landscape (continued from page 1)
disease. It turns out that the C9ORF72
mutation leads to abnormalities of the
TDP-43 protein, the same protein that is
implicated in several other FTLD-causing
genes, including PGRN. Numerous
laboratories are exploring the function
of C9ORF72 and the role of abnormal
TDP-43 in causing frontotemporal
degeneration.
New Emphasis on Drug Discovery and
Development
Drug
trials
for
frontotemporal
degeneration are starting to gain
momentum. AFTD has taken a
proactive role in this area. The
Frontotemporal Degeneration Study
Group (FTSG) will be managed by
AFTD. The recent meeting of FTSG
in San Diego in November attracted
nearly 150 investigators. Its mission is
to create a coalition of basic scientists,
clinicians and pharmaceutical companies
for developing novel pharmacological
treatments aimed at frontotemporal
degeneration. AFTD also maintains a
pivotal partnership with the Alzheimer’s
Drug Discovery Foundation. This
partnership has led to the award of
$1.9 million to meritorious proposals in
the general area of drug discovery for
frontotemporal degeneration.
There is More to Treatment Than
Drugs
Life does not stop at the initial diagnosis
of bvFTD or PPA. In fact, many of our
patients pursue customary daily activities
and enjoy a broad range of social and
recreational functions. A major goal is
to design individualized programs that
maximize quality of life while facilitating
adaptation to new realities imposed by
the disease. Ignorance and bewilderment
in this area are being replaced by
experienced
healthcare
providers,
informative
websites,
nationally
distributed educational materials, and
specialized PPA and bvFTD caregiver
conferences. The National Institute on
Aging has recently released an educational
pamphlet entitled “Frontotemporal
Disorders - Information for Patients,
Families, and Caregivers.” More than
AFTD Names New MAC Chair
The AFTD Board of Directors is tremendously pleased to appoint Dr. Marsel
Mesulam as Chair of the Medical Advisory Council (MAC) for 2012 – 2014. Dr.
Mesulam is revered worldwide as a leader in the field of primary progressive
aphasia. He directs the Alzheimer’s Disease Center at Northwestern University
and has been on AFTD’s MAC since its inception in
2003.
I also want to take this opportunity to extend our
heartfelt gratitude to Dr. Bradley Boeve for his service
as MAC Chair for the past 4 ½ years. This was a period
of tremendous growth for the organization, and Dr.
Boeve’s industrious, generous and compassionate
leadership was a central force in this growth.
AFTD is blessed to have many such leaders on our
MAC, including two of our founding MAC members, Dr. Bradley Boeve, prior
Drs. Thomas Bird and Andrew Kertesz, who recently MAC chair
retired. We are grateful for their dedicated partnership
and with their guidance and support we will realize our vision of a world
where FTD is understood, effectively diagnosed, treated, cured and ultimately
prevented.
--Beth Walter, AFTD chair
n
Volume IX, Issue 1: Spring 2012
65,000 of these booklets have already
been distributed and additional printings
are planned. Patient and caregiver
conferences for PPA and bvFTD are being
organized throughout the country, with at
least four expected during 2012, including
the conference scheduled for March 24 at
Northwestern University in Chicago and
AFTD’s event in Atlanta in April.
Biomarkers
The clinical syndromes of bvFTD, PSP,
CBD and PPA are most commonly
caused by FTLD. However, each of these
syndromes, especially CBD and PPA,
can also be caused by atypical forms of
Alzheimer’s disease. Furthermore, bvFTD
and PPA can be caused by different
subtypes of FTLD. The definitive
distinction among these cellular “causes”
can only be made at autopsy. There has
therefore been a great deal of interest in
developing biomarkers that can increase
our ability to predict the most likely
underlying cause during life. The most
promising biomarkers currently available
for clinical use are amyloid imaging
with positron emission tomography
(PET) and spinal fluid analysis for
measurements of phosphotau and beta
amyloid. The results of these tests help
to determine whether the underlying
disease is of the Alzheimer- or FTLDtype. This is an important distinction
that influences treatments prescribed by
physicians. Just last month AFTD and
ADDF announced the award of three
new grants in support of biomarkers
research. (See story on pg. 5)
International Society
Clinicians and researchers working
on FTLD are spread throughout the
globe. Once every two years, we come
together at the biennial International
FTD Conference, the 8th of which
is scheduled for September 2012
in Manchester, UK. Until now, the
organization of each conference was left
to the local organizers who had to struggle
The Association for Frontotemporal Degeneration
n
5
Volume IX, Issue 1: Spring 2012
Drug Discovery Grantees Named
A
s part of AFTD’s Drug Discovery Partnership with
the Alzheimer’s Drug Discovery Foundation, the
organization will be co-funding three new projects
this year. The first award to Adam Boxer, M.D., Ph.D.,
of the University of California, San Francisco, will lay the
groundwork for a clinical trial designed to elevate levels
of progranulin in people with FTD symptoms due to a
mutation in the PGRN gene. Dr. Boxer’s work will test
the ability of investigators to ship samples from site to site
and to measure accurately the amount of progranulin in
each sample, as well as investigating other markers in the
blood that might indicate that progranulin levels have been
increased successfully.
The second award to William Seeley, M.D., also of the
University of California, San Francisco, will test a new
“network-based” imaging method to try to detect early
stage FTD and monitor the progression of the disease.
While most imaging techniques are based on changes in
different physical locations within the brain, this technique
attempts to look at changes in the way neurons in the brain
are connected to one another.
Finally, Charlotte Teunissen, Ph.D., of VU University
Medical Centre, The Netherlands, will identify proteins
Landscape
(biomarkers) present in cerebrospinal fluid that can provide
an early and accurate diagnosis of FTD. The ability to
diagnose the disease more efficiently will allow for families
to make better plans and for patients to participate in clinical
studies earlier in the course of their disease.
The image above features Dr. Seeley’s work with FTD. Patients
with behavioral variant FTD show reduced functional connectivity
compared to controls in red highlighted regions. The project funded in
Dr. Seeley’s lab will explore network connectivity changes over time
in patients with semantic variant primary progressive aphasia and
progressive supranuclear palsy.
(continued from page 4)
with innumerable details. Continuity
from one conference to the other was
necessarily uneven. This is about to
change thanks to the International FTD
Society that has been formed just a few
months ago. The Society will coordinate
scientific meetings and also serve as the
administrative and intellectual umbrella
for worldwide coordination in the field
of frontotemporal degeneration.
A National Registery with the FLTD
Module
The field of Alzheimer’s disease
benefited from the creation of the
National Alzheimer Coordinating Center
(NACC), which acts as a clearinghouse
of data collected at multiple centers
throughout the USA and as a facilitator
of collaborative research. Through a new
initiative jointly funded by the National
Institute on Aging and the National
Institute on Neurological Disease and
Stroke, the NACC has agreed to become
a repository for similar data related to
FTLD, PPA, bvFTD, and specific forms
of CBD, PSP and ALS associated with
behavioral and cognitive changes. An
“FTLD module,” which will become
the vehicle for such data collection, was
recently finalized and will go “live” in
early May. The activation of this module
will improve diagnostic uniformity
across centers and will encourage largescale collaborative research ventures.
Passing of the Torch
I am grateful to Brad Boeve for his
outstanding service as Chair of the
AFTD Medical Advisory Council (MAC).
He has set standards that will continue
to guide the activities of the MAC. As
past-president, Brad will continue to
serve on the MAC as a member of its
Executive Committee. Current progress
in
understanding
frontotemporal
degeneration owes a great deal to pioneers
who had the foresight to focus on this
field at a time when very little was known
and very few were interested. I want to
take this opportunity to thank two of
these pioneers, Tom Bird, M.D. and Andy
Kertesz, M.D., founding members of the
AFTD Medical Advisory Council, who
are stepping down from the MAC upon
their retirement and whose contributions
will continue to shape future thought in
this field.
Marsel Mesulam, M.D.
Chair, AFTD MAC
6
The Association for Frontotemporal Degeneration
Donations Honor Loved Ones
In Honor Of:
Lawrence L. Albert
Bill Allen
Betty Almeida
Michael Angello
Hector Arechiga
Robert & Patricia Barr
Jay Bellwoar
Trish Bellwoar
Anita Berkowitz
Linda Bernardin
Sandra Bishop
Eric Blomberg
Polly Bloor
Richard Blount
Willia Mae Bowlin Boliek
Catherine W. Broer
Suzanne J. Broudy
Bill Brown & Family
Michelle Brown
Jim Buchanan
Greg Budd
Betty Ann & Maitland Chase
Tai Chen
Stas Chrzanowski
Larry Cline
Sue Connolly
Mary Ann Coon
Stephen Crane
Susan Croll
Susan Danis
Dennis DeLorenzo
Anette DeMore
Bryan Deuermeyer
Brad Dickerson, MD
Jane Dier-Russell
Alex Dikkers
Diane Drayson
Kathy “Kit” Dusky
Mary Einhorn
Chuck Engel
Janice Ehrmann
Bill Fehon
Michael Fenoglio
Stephen Fenoglio
Frances Floystrop
Jim & Carlynn Framstad
Steve Gebhardt
Kathy & Al Getson
John Gibbs
Howard Glick
Victoria Glandon
Patricia Gracin
James E. Graham
Ted and Nancy Groseth
Dick Gruber
Alice Guiney
Robert Haldeman
Pat Halligan
Phyllis Hentz
Mary Hesprich
Lee Hill
Mildred Ely Hill
F. Trent Hill and family
Kathy Hornbaker
Gwen Cruit Johnson
Hannah Kamin
Kamin Family
Donna Klinedinst
Marlyn Lawrentz
Carillon Leader
Kwong S. Lee
Arnette & Paul Lester
Emily Levy
Jada Lewis
Robert Lewis
Ernest L’Heureux
Paul N. L’Heureux
Raymond E. L’Heureux
Dale Lutz
Kristoffer Lutz
Thomas L. Maher
Barry Marcus
Susan Marcus
Ken Martin
Beverly Martling
Bob Matusiak
Patsy H. Matz
Kathy McAndrew
Janie McManus
Al McNulty
Lois Miller
Stan Miller
Thomas Miller
Mom
Ben Morse
James Morse
Arthur Moyer
Marie Annette Nichols
Faye Oliveri
Larry Olivieri
Charles W. Pasic
Mary Rebecca Pasquarielo
Donna Pedrick-Paradis
Angela Peifer
Jim Peifer
Bette Phillips
n
Volume IX, Issue 1: Spring 2012
Gifts received from June 15 - October 1, 2011
David Porter
Pasquale M. Procacci
Carol Radtke
Betsy Rossi
James C. Rowell, Jr.
Lynne C. Sanders
Arpiar Saunders
Paul T. Schleyer
Jackie Schneider
Paula Scott
Kristin Seewaldt
Holly Shamsai
David Shenker
The Shenker Family
Orville and Patti Sherrod
Lewis Silver
Ellen Solomon
Allan and Kathy Stackhouse
Bucky & Paula Stackhouse
John Stackhouse
Linda Stackhouse
David Stikkers
Paul Strandberg
Shirley Strausser
Mark Sullivan
Albie Sylanski
Barbara Tinsley
Stephen Tipton
Ellen R. Trosclair
Carol Tyler
Stephen Umin
Julia VanDyke
Helen Van Son
Jeff Van Son
Michele Walker Van Son
James Vowell
Beverly Waite
Jane Ward
Vahl Warren
Wedding guests of
Scottie Hill & Alex Brito
David Westmoreland
Wilkes Barre Academic
Faculty
Judy Windhorst
Dr. John M. Wisneski
Chris & Christopher Yurkanan
In Memory Of:
Jerry Aden
Glenn G. Andrews
Frances Angelino
Naida Aquilino
Emerson R. Avery, Jr.
Craig M. Bachelder
Gerard T. “Jerry” Bannan
Bill Basile
Gerald “Jerry” Barr
Anna Benware
David Berkowitz
Joseph J. Bertolini, Jr.
Thomas Biermaas
Lee Birch
Sondra Birnbaum
Marilyn Boilen
Marilyn Bolyard
Jim Bradford
Lorraine M. Brassard
Marjorie Broderick
Marilyn Louise Brooks
Ruth Brumberg
Tom Buchholz
Joan Ann Bugler
John Maloney Cain
Arcangelo Capparella
Cindy Cardosi
George Carlson, Jr.
Donald Carnig
Jack Caviston
Maria Tusia Clairwood
Edward E. Clayton
Karen Sue Cleveland
Emilie Cobb
Mitchell Cohen
James J. Coleman
Craig Comstock
Steve Conneally
Eddie Costigan
Michael R. Cunningham
Virginia Dalesandro
Stan Daniels
Ann Davis
Edith Saylor Davis
Wilfred Denise
Nancy B. DeWitt
Maria A. DiNoto
Carolyn Rockefeller Dodson
Rose Ann P. Duffy
Janet Dunne
George Edwards
William Eissler, Sr.
Georgia Ellexson
Tom Ellis
Frank Engelkraut
Anne Everard
Nanny Farrara
Margaret Faulkner
Mike Fischer
The Association for Frontotemporal Degeneration
n
7
Volume IX, Issue 1: Spring 2012
AFTD is grateful for these gifts, which fund research, education and support.
Maryellen Tracey Forte
Terry Franz
David J. Freud
Rosemary K. Gallagher
George T. Gardner
Grover Grimm
Amos Guidry, Jr.
Mary Gutierrez
Lois Hager
William “Tom” Haines
Albert C. Hall
Richard Hanechak
Joe Haney
Doug Hanks
Harry Hanson
Robert Hartman
Robert M. Hatfield
Harold Hedaya
Dr. Bernard S. Hellinger
Deacon James Hepp
Robert Hermann
Tom Hiebert
Sally E. Hill
Harvey Hook
Lyle J. Hopler, Jr.
Pete Horn
Lynn James
Michael Jennings
Brad Johnson
Julianne Esther Johnson
Karen Stevens Jones
Cathy Elaine Jones
James C. Kearney
Michael Kelly
Richard Kennedy
Bobby King
Jim Knox
Jerry Koch
Daniel Paul Koerner
Karen Sue Kohn
Judith A. Krueger
Diane Kukac
Ben Laden
Linda Nicholson Larkin
Mary Beth Law
Charles A. Lawson, II
Gary Lawyer
Linda Hubbard Lemon
George Lensky
Rhoda Gastman Liken
David Lowell
Terry Maglich
Phyllis Malloy
Mary Maloney
Maria Carmen Islas Martinez
Ronald Martling
Richard Maulorico
Joan Mazzarelli
William McAfee
Edward McAndrew
Mary W. McCullough, Ph.D.
Ed McDermott
Mary McKee
Ann McLellan
Moussa Menasha
Susan Mertz
Charles Henry Miller
Joe Miller
Dennis Mixdorf
John Mockler
Harold Morris
Gale Warren Moser
Fereydoon Naghavi
Marie Newman
Terry O’Connor
George August Palka
Hugh M. Parrish
Roland “Butch” Pastika
Marietta Penska
Camilla Perry
William Pliskin
Ralph Pingleton
Tim Pinson
Karren Pope
Carole Powell
Julienne Prineas
Cynthia Rambo
Kaye Rassman
Scott Hayward Reed
Doug Reis
Donald Richter
Elmer Riedner
Stan Roberts
Elsie Rodgers
Doug Rogers
Louis T. Romeo
Carol Rosey
Ted Rynn
William Sackheim
Alma Sakoda
Harriet Sagel-Falk
Betty J. Schwarz
William C. Schwingen
George Michael Seli
Popkin Shenian
Ned James Shepherd
George F. Sidoris
Deborah Smachetti
Leo Snowiss
Robert Charles Sodoma
Karen M. Sorensen Sommers
James Hamilton Spears
Billy Spradley
Michele Marie Stanley
Dennis Steffen
Joan Stuit
Carol Louise Sumrall
W. Ashley Swonger
Robert J. Sykes, Jr.
Daniel Sztaicher
Dr. Harold Teplitz
Robert H. Terry
Alice Thomsen
Dan Thomson
Haven Toothman
Judy Trachtenberg
Richard Tucker
Richard VanDyke
Carmella Vernick
Nina Waldron
Michael Wallis
Michael Walter
Diane Lamb Wanucha
Rosemary “Cookie” Weiten
Judy Carol Westfaul
John Wilhelm
Gail Wood
Glenn C. Yawger
Julie Dickmeyer Zerhusen
David Paul Zomback
Columbia University Hosts CME Course on FTD by Jill Goldman, M.S., CGC
O
n December 12, 2011, approximately 85 medical
professionals attended a half-day continuing medical
education course (CME) entitled “Is It Alzheimer’s
Disease or Frontotemporal Degeneration: An Update on
Diagnosis, Management and Research” hosted by Columbia
University. The College of Physicians and Surgeons of
Columbia University provided 4.0 credits to those attending.
AFTD and Pfizer were sponsors of the course.
Faculty at Columbia designed the program in response to an
all-too common question of caregivers: Why does it take so
long to get the right diagnosis? The audience for the course
was psychiatrists and neurologists who would be most likely to
see FTD patients early in their disease course. Other medical
professionals were also invited to attend.
Dr. Ted Huey (neuropsychiatrist), Dr. Larry Honig (neurologist),
Dr. Stephanie Cosentino (neuropsychologist), Jill Goldman
(genetic counselor) and Dr. Karen Duff (neuroscientist) from
Columbia’s Taub Institute presented the day’s program. AFTD
Executive Director Susan Dickinson led the caregiver portion of
the course.
Through the use of case histories and questions asked via an
audience response system, the speakers’ presentations differentiated
FTD and Alzheimer’s by clinical symptomology, imaging and
biomarkers, neuropsychology, genetics and treatment. Susan
Dickinson introduced AFTD’s film It Is What It Is, and a caregiver
panel comprised of Joan Benanbaum, Lyn Howell and Gabriella
Gallante followed with a discussion of the documentary. AFTD
and Columbia hope to work with other clinical centers to replicate
the program in other areas of the country.
8
The Association for Frontotemporal Degeneration
n
Volume IX, Issue 1: Spring 2012
Somebody to Lean On: Diversifying Ways to Connect
B
ill Withers got it right when he
penned the lyrics for his 1972 hit
song, “Lean On Me.” Sooner
or later, we all need someone to lean
on, and never more so than when the
shadow of FTD crosses our horizon.
Support groups fill a need that can only
be calmed by others who understand
the path we walk. Members help each
other carry on when the burden feels too
heavy to lift. Along with the increasing
number of support groups comes a
diversity in format as well. From a “men
only” group to grief support via phone
and a private online forum on Facebook
for patients, FTD support groups are
evolving to meet the needs of different
communities.
Fighting his way back from the despair he
felt when his wife Susan was diagnosed
with FTD in 2009, Lee Danis knew that
he needed help. Coping meant selling
their home in East Texas and moving
to Dallas, closer to their daughters
and to the doctors Susan would need.
Coping also meant acting on the difficult
decision to place Susan in an assisted
living facility when caring for her at home
became too challenging. Lee attended a
couple of meetings at an FTD caregiver
support group in Fort Worth, but he
quickly recognized that “men would be
more likely to attend an all-male group.”
About eight months ago, he placed a
free advertisement in the senior section
of the Dallas County News and started
a unique support group—one just for
men.
Lee says that monthly meetings provide
a safe environment where members can
share “anecdotal information about
taking care of our wives and trying to
live a normal life.” Currently numbering
8–12 men, group members typically share
information about medical professionals
and care facilities, giving a thumbs-up or
thumbs-down on the positives and the
negatives they encounter. Perennial topics
include financial and legal issues, as well
as finding and hiring in-home caregivers.
They also encourage each other to “do
something about difficult problems” and
to seek help and emotional support for
themselves.
Withers wrote that despite pain and
sorrow “We know that there’s always
tomorrow.” Carol Lovett understands
that better than most. After her husband
died from FTD in 2006, her professional
training as a licensed clinical social worker
and her authorship of a book chapter on
the grief and loss that accompany caring
for someone with dementia made her
a natural for leading an FTD support
group near her home in Delaware.
“Caregivers are looking for a
place to share their story and
a place to be heard by others
with similar experiences who
understand and validate their
unique story.”
- Carol Lovett,
Grief Phone Support Group
Leader
AFTD Program Director Sharon
Denny challenged Carol further last
year when she asked her to consider
facilitating a telephone support group
that specifically focuses on the grieving
process after a loved one’s death. Today,
monthly meetings are conducted via a
conference call, removing the burden
of time and distance for members who
cannot easily travel to a meeting place.
Carol aptly observes that “caregivers are
looking for a place to share their story
and a place to be heard by others with
similar experiences who understand and
validate their unique story.”
But what about the patients? Where are
the support groups for them? That’s
what Howard Glick asked when he was
diagnosed with FTD following a 6.5-year
period of misdiagnoses that included
depression and bipolar disease. “What
about me?” he asked when he looked
for help after his doctor instructed him
to get his affairs in order and issued a
firm order not to read about FTD. The
answer he found was quick and harsh: no
support group for FTD patients existed.
Howard had to face the dyssynchrony
that frequently exists between modern
medicine and the patients it serves.
Howard had an answer…he started his
own group and began to help himself.
Today, his private Facebook group
reaches people around the world and
gathers 36 people with FTD together for
regular, virtual meetings. His blog draws
upward of 2,000 hits each month from
people searching for information about
FTD. Both Forbes and Dementia Today
have profiled Howard’s struggle to live a
productive life. He works hard every day
to manage the symptoms of behavioral
FTD while learning everything about
“this strange disease” that afflicts
him. Howard says he has undertaken
“a mission to educate people, increase
public awareness of FTD and help
other patients.” He is painfully aware
that he has no idea how long he can
continue, and he knows that the disease
will eventually rob him of his ability to
communicate effectively. Until then, he
aims to keep talking.
The three individuals profiled here
illustrate diverse ways of giving and
receiving support for people coping with
FTD. Lee, Carol and Howard share a
bedrock determination to reach beyond
themselves and help others in similar
situations. Much like Dave Dillon, Angela
Kimble and Kelly Drake—all profiled in
the fall issue of this newsletter—they
find comfort and solace in helping others
face whatever FTD will bring.
Contributor Karen Williams is a freelance writer and
editor located in Weymouth, MA. Her childhood
friend was diagnosed with FTD in early 2011.
The Association for Frontotemporal Degeneration
n
Volume IX, Issue 1: Spring 2012
9
AFTD’s HelpLine: Getting Answers to FTD Questions
F
or many people, their first encounter with AFTD is
via the Helpline: the front door to information about
FTD and help finding support or resources. This
phone and email support system was created shortly after
the organization was founded ten years ago, and it remains
AFTD’s most important direct service to patients and
caregivers.
In the beginning, calls were handled by the Association’s
founding board members, a reflection of their commitment
to responding to the concerns of individual caregivers. Since
then, approximately 5,000 inquiries have come through,
covering just about every topic imaginable. The Helpline
now receives over 100 calls and emails each month.
If AFTD cannot answer a question, staff will tap their
network of medical advisors, professionals and experienced
caregivers to find someone who has the information to
respond to the caller. The HelpLine is not staffed by medical
doctors and is not meant to be an alternative to a physician;
specific medical questions or true crises should be directed
to a medical professional.
It is staffed weekdays
by
AFTD’s
program
professionals who strive to
respond to inquiries within
1-2 business days.
“The question that prompts
a person to call is usually just Matt Sharp on the HelpLine.
the beginning,” said Matt Sharp,
AFTD program coordinator. “Often the most valuable service
we provide is the chance for someone to talk about the challenges
they are confronting and let them know they are not alone.”
The HelpLine has been the vehicle for things such as matching
a caregiver with another caregiver as a support system, directing
callers to an FTD support group and referring someone to
resources (sometimes on a local level) that are available to them.
The Helpline started as a toll-free telephone line (866-507-7222)
and inquiries can now also be made via e-mail to info@theaftd.
org or a link on our website.
AFTD Resources Help Families as the Vanguard of
FTD Education
“H
ow can I find help when nobody has any idea
AFTD recognizes that a grassroots approach to FTD
what FTD is?” This frustration defines the
education is one of the most effective ways to deliver
experience of earlyinformation to people who need it.
stage patients and those caring for
Equipping Your FTD Education Toolkit According to Denny, “A provider
someone with FTD. The lack of
will pay attention when a patient or
understanding about FTD creates Your FTD Information File – information to family member knocks on the door
constant challenges for families copy and leave with a new provider
asking for help. We want to make
already consumed by managing
sure caregivers are ready to seize
daily care.
It Is What It Is – AFTD’s short film showing the that opportunity rather than feel
defeated by the lack of knowledge
unique toll of FTD
Patients and families need the
in the medical community.”
assistance of a full range of
Partners in FTD Care – Resources designed for
community services from doctors
Education of health professionals is
community professionals
and lawyers to school counselors,
a growing area of AFTD’s mission.
home health aides and long-term
New resources are continually
HelpLine – Available to professionals and
care providers. However, in many
developed that introduce FTD and
families alike
cities and towns, someone seeking
offer opportunities to learn more.
services is still likely to be the first
Families can start by compiling an
Website – Section for healthcare professionals
person with FTD that a provider
FTD information file with articles and
has met.
resources relevant to their particular
situation. They should keep several
“Families really are the vanguard of education about FTD,”
copies on hand to leave with any new service provider
said Sharon Denny, AFTD program director. “Caregivers
they contact and then direct them to AFTD. Our website,
shouldn’t have to teach everyone by themselves, and now,
Helpline and Partners in FTD Care initiative provide solid
they no longer do.”
back-up information.
10
The Association for Frontotemporal Degeneration
Awareness: Bill’s Best BBQ Sauce
T
hroughout our little borough of Bryn Athyn,
Pennsylvania (just a few miles northeast of Philadelphia)
my husband, Bill Fehon, is known fondly for teaching
for over thirty years at the local high school (Academy of the
New Church) and his original barbeque sauce. His interest
in making barbeque sauce started in the early 1990s, when he
developed the recipe and began making it as Christmas gifts.
Over the years it became so popular that
people on “the list” would hide the bottle
after Christmas so they wouldn’t have
to share with their family members or
they would beg for more when they ran
out. So naturally, Bill started thinking
about selling his sauce. Unfortunately,
this is one goal he won’t ever be able to
achieve.
n
Volume IX, Issue 1: Spring 2012
by Diane Fehon
food industry or knew how to run a business, let alone begin
one. But it just felt like the right thing to do. We also decided
that it was important for us to donate a portion of the profit
from every bottle sold to The Association for Frontotemporal
Degeneration. After many phone calls and research, we sold our
first bottle of Bill’s Best Original BBQ Sauce in May of 2011.
In August of 2011, the sauce was officially certified USDA
organic. And at this time, we’ve sold over
1000 bottles! (For more information, go
to www.billsbestbbq.com or contact us
at [email protected].)
The most rewarding part about this
whole adventure is that we’re making
something positive out of a negative
situation. Bill was so proud of the
popularity of his sauce. Even though
In November of 2009, Bill was diagnosed
he doesn’t understand how successful
with FTD. Not only was he unable to The Fehons: sons Garrett, Anders, Jeremy, Jason & Bill’s Best BBQ is becoming, one of
Aaron; front row: Bill & Diane
continue to teach at the Academy, Bill also
his repeated actions is to talk about how
had to stop making his barbeque sauce. He simply couldn’t much people love his sauce and how they beg him for more.
follow the recipe anymore. People around town were very At the moment, Bill’s Best Original BBQ Sauce is being sold
concerned for Bill and his family; they also kept asking about in eight stores in the Philadelphia area and it’s also available on
what would happen to the barbeque sauce. One friend of the Amazon.com. By the end of March, we plan to have a spicy
family was so worried that she called to find out if the recipe version available as well. In less than a year, we’ve been able to
had been written down or if it only resided in Bill’s brain. (We donate over $400 to AFTD, and we know that the amount will
had, of course, written it down). This incredible support for increase as we reach our one-year anniversary in May. It’s sad
Bill’s barbeque sauce made my five sons and I wonder if we that Bill won’t ever understand that his dream has been realized
could successfully make and sell it as a business. The idea was but it’s nice for my sons and I to know that his recipe might
daunting, considering none of us had any experience in the play a part in finding a cure for this debilitating disease.
Advocacy: Meetings on the Hill
I
n January, AFTD board members Earl Comstock and
Popkin Shenian visited the Washington, DC offices of
Pennsylvania Senators, Bob Casey (D) and Patrick Toomey
(R) with AFTD Program Coordinator, Matt Sharp. The goal of
the visits was to introduce the Congressmen to Pennsylvaniabased AFTD and lay the groundwork for collaboration between
the Senators’ offices and AFTD to ensure continued funding
for medical research on finding treatments and a cure. Earl, Pop
and Matt spent about half an hour with staff from each office.
After introductions and relating personal and professional
experience with FTD, they briefed the Washington aides on
the work AFTD is doing to facilitate collaboration between
NIH, medical researchers and pharmaceutical companies to
make clinical trials for FTD a reality. AFTD’s advocates also
highlighted the organization’s progress in raising public and
professional awareness of the disease and educating medical
and healthcare professionals about FTD and caring for those
affected.
In Senator Toomey’s office, they met with legislative aide
Tessie Abraham who had never heard of FTD before. Ms.
Abraham indicated that Senator Toomey considers NIH to
be an essential federal agency and supports the work done
through the agency.
On January 18, they visited with Senator Casey’s legislative
aides, Deirdre Fruh and Gillian Mueller. Senator Casey is a
strong supporter of the NIH and sits on the Health, Education,
Labor, and Pensions (HELP) committee which oversees NIH.
Ms. Fruh was particularly interested in the work AFTD is doing
and the potential of clinical drug trials for FTD and welcomed
continued contact and information from AFTD.
These visits were both productive in establishing contacts in
the senators’ offices and informative by testing talking points
for continued efforts on this important aspect of AFTD’s
mission.
The Association for Frontotemporal Degeneration
n
Volume IX, Issue 1: Spring 2012
aftd
the
11
Welcome spring by sowing the
seeds of hope!
- team
Russell Zomback Takes on the Philly
Marathon
On Sunday, November 20, 2011, Long Island resident Russell Zomback tested his legs in the Philadelphia Marathon in memory of his
father, David, who passed away from FTD in 2010.
Every dollar you give to AFTD for Drug
Discovery this spring will be matched 2:1 by
our partners at the Alzheimer’s Drug Discovery
Foundation (ADDF) and produce $3 toward
development of treatments and a cure.
Join us by investing in a future of hope!
With a finishing time
To make a gift, please visit our website at
of 4:14:16, Russell
www.theaftd.org
ran the last mile with
his three daughters
who were there to
cheer him on. He
said that was a “great
experience for all of Assistant Professor at University of California - Davis
them.”
Medical Center Brandee Waite, M.D. teamed up with a
dozen other family and friends to raise awareness and
Russell was AFTD’s $345 for AFTD by participating in the Urban Cow
Jenna, Lori, Russell and Annie Zomback after the
“Givezooks! guinea 5K in Sacramento on October 2, 2011. “Team Bev,”
marathon.
pig,” as he was the named after Brandee’s mother who is affected with FTD,
first person to use our online fundraising system. Through his ef- sported matching shirts as well as red headbands and
forts, he $5,569 for AFTD, which was matched 2:1 by Alzheimer’s wristbands.
Drug Discovery Foundation for FTD drug discovery.
Team Bev at the Urban Cow 5K in Sacramento, CA on October 2.
Brandee Waite Runs the Urban
Cow 5K for AFTD
Hope for the Holidays
AFTD Board Member Colleen Quinn and several
members of her family also launched a Givezooks!
online fundraiser for AFTD at the end of 2011 in
memory of her father, Ed McAndrew, who passed away
from FTD in 2005.
Along with Colleen and her husband Brendan, brothers
Ed, Dave, Tim and their wives teamed up to raise $4,160
for AFTD through “Hope for the Holidays.”
AFTD’s “With Love” Campaign 2012
In January, AFTD launched its first online fundraising campaign
entitled “With Love.” The concept, tied to Valentine’s Day,
was designed to not only raise money for
care and a cure for FTD, but also to raise
awareness of the disease. The organization
posted a main campaign page, featuring Chris
and Christopher Yurkanan of Texas and their
“love story.” Within an hour of announcing
the campaign, AFTD had its first fundraiser from the FTD
community design and publish her own “With Love” letter.
Soon after, there were several others sharing their “With
Love” stories. All told, 22 individual fundraisers helped
to raise $26,750 for AFTD through the
campaign, which includes a $5,000 match from
an anonymous donor supporting the “Team
Alice” fundraiser.
AFTD would like to thank every person and
family who created their own “With Love” story and gave
voice to FTD.
The Association for Frontotemporal Degeneration
n
Volume IX, Issue 1: Spring 2012
Prsrt. Std.
U.S. Postage
PAID
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If you prefer to receive this newsletter via email or
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AFTD
Board of Directors
www.theaftd.org
n
phone: 267.514.7221
Beth Walter
Chair, California
Francine Laden, Sc.D.
Vice Chair, Massachusetts
Bryan Dalesandro
Treasurer, Pennsylvania
Susan Eissler
Recording Secretary, Texas
Earl Comstock
Washington, D.C.
Helen-Ann Comstock
Pennsylvania
Debbie Fenoglio, RN
Colorado
Amy Kamin
New York
Jary Larsen, Ph.D.
California
Emily Levy, M.B.A.
Massachusetts
Sylvia Mackey
Maryland
Linda Nee, LCSW-C
Maryland
Colleen Quinn
Washington, D.C.
Lisa Radin
Nevada
Popkin Shenian
Pennsylvania
Staff
Angie Maher
Communications Manager
Pam McGonigle, M.A.
Development Manager
Matthew Sharp, M.S.S.
Program Coordinator
Michelle Leahy
Office Manager
Susan L-J Dickinson, M.S.
Executive Director
Sharon S. Denny, M.A.
Program Director
Sharon Hesterlee, Ph.D.
Scientific Director
n
toll-free phone: 866.507.7222
Medical Advisory Council
M.-Marsel Mesulam, M.D.
Chair, Northwestern University
Bernardino Ghetti, M.D.
Vice Chair, Indiana University
Bradley F. Boeve, M.D.
Mayo Clinic, Rochester
Tiffany W. Chow, M.D.
University of Toronto
Bradford C. Dickerson, M.D.
Harvard University
Dennis W. Dickson, M.D.
Mayo Clinic, Jacksonville
Karen Duff, Ph.D.
Columbia University
Jill Goldman, M.S.
Columbia University
Murray Grossman, M.D., Ed.D.
University of Pennsylvania
Michael Hutton, Ph.D.
Eli Lilly & Co. UK
David S. Knopman, M.D.
Mayo Clinic, Rochester
Walter A. Kukull, Ph.D.
University of Washington
Virginia M.-Y. Lee, Ph.D.
University of Pennsylvania
Carol F. Lippa, M.D.
Drexel University
Irene Litvan, M.D.
University of Louisville
Ian R.A. Mackenzie, M.D.
University of British Columbia, Vancouver
Mario Mendez, M.D., Ph.D.
University of California, Los Angeles
Bruce L. Miller, M.D.
University of California, San Francisco
Jill Murrell, Ph.D.
Indiana University
Rosa Rademakers, Ph.D.
Mayo Clinic, Jacksonville
Howard Rosen, M.D.
University of California, San Francisco
John Q. Trojanowski, M.D., Ph.D.
University of Pennsylvania
For permission to reprint articles, please contact [email protected] or call 267.514.7221, ext. 2530.
AFTD is a non-profit, 501(c) (3), charitable organization. A copy of AFTD’s official registration and financial information may be obtained from the PA Department of
State by calling toll free within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.