The Association for Frontotemporal Degeneration
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Volume X, Issue 2: Summer 2013
Volume X, Issue 2
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Summer 2013
FTD Segment Airs on NBC Nightly News
n Thursday, June 13, NBC Nightly News with Brian
Williams broadcast a story about one family’s
journey with FTD. The segment, featuring AFTD
Board Member John Whitmarsh and
his affected wife Barbara, lasted a little
under three minutes and was reported by
former NBC Chief Science and Health
Correspondent Robert Bazell.
of the University of California, San Francisco. The day after
the piece aired, NBC announced that it had been Bazell’s
final story at NBC; after 38 years with the network he was
leaving to become an Adjunct Professor
in the Department of Molecular, Cellular
and Developmental Biology at Yale
University.
“This kind of national exposure for FTD
The groundwork for this spot on the
on such a prominent news show was just
national news was laid by Nicole Savini,
phenomenal,” said AFTD Executive
a field producer with The Colbert Report
Director Susan Dickinson. “Expanding
whose mother has FTD and who has
awareness of this rare disease is
been working with the AFTD Awareness
fundamental to everything we want to
Committee for a few years. Nicole
accomplish for our community, and this
shared her own family’s story with
was a key step forward. We are grateful to
John and Barbara Whitmarsh, 2010
Bazell, who listened with compassion
everyone who helped to make it happen.”
and was intrigued to learn more. AFTD
was able to arrange for interviews with the Whitmarshes and To view the segment, go to www.nbcnews.com, then search
AFTD Medical Advisory Council Member Dr. Bruce Miller under “frontotemporal.”
Inside This Issue
Spotlight On
Debbie Fenoglio...................... 2
News Briefs................................. 2
Salt Lake City Conference........... 3
New AFTD Chair.......................... 3
Scientific Director Hired............. 4
Food for Thought........................ 5
Donations................................ 6-7
Respite for Caregivers................. 8
Roaming..................................... 9
Giving a Hand to Volunteers....... 9
Awareness ............................... 10
The AFTD-Team........................ 11
National Alzheimer’s Project Act:
Advocating for Research & Services
to Benefit FTD
S
ince March 2012, AFTD has been advocating with federal officials to ensure that the
National Alzheimer’s Project (NAPA) encompasses FTD, along with Alzheimer’s, as
a target for a cure by the year 2025. On May 1 and 2, AFTD accomplished a major
step forward when the organization co-sponsored a meeting at the National Institutes of
Health (NIH) focused entirely on ensuring that issues related to FTD, as well other related
dementias, are addressed by NAPA.
Titled “Alzheimer’s Disease-Related Dementias: Research Challenges and Opportunities,”
this two-day scientific workshop established goals of identifying special challenges,
defining objectives and setting priorities for research on these rarer diseases. In addition
to nine AFTD staff and board members in attendance, half of AFTD’s medical
advisory council attended the workshop, presented their research and sat on an expert
(see NAPA on page 4)
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The Association for Frontotemporal Degeneration
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Volume X, Issue 2: Summer 2013
Spotlight On...Debbie Fenoglio, AFTD Board of Directors
E
ver since Debbie Fenoglio can remember, she wanted to
be a nurse. Her mom was a nurse, and having grown up
on a farm in eastern Colorado, Debbie found that caring
for animals and elderly family members made for a natural
transition into medical care.
After Debbie received her registered nursing license, she met
Mike Fenoglio at a Denver hospital. At that time, he was a
young intern beginning his general surgery residency. Little did
she know then that their chance meeting would eventually end
up in a 27-year marriage…and an unwanted journey with FTD.
Mike was an aspiring, well-respected surgeon enjoying a very
successful private practice for 20 years when the family began
to notice changes in his
behavior and personality.
The once easy-going
surgeon became irritable
in the operating room
and at home. After a
year of searching for
an explanation for the
changes that Debbie and
her children were seeing
in the husband and
father they loved, the
family learned that Mike
Debbie Fenoglio
had FTD at the age of 51.
“Looking back on those first few years after diagnosis, it’s like
a fog,” said Debbie. “Tremendous changes took place, and
we had role reversals—not just for me, but for our children as
well. We became the parent of the man who was the center
of our whole life. After a six-year battle, we lost Mike to the
disease in 2012.”
As the turmoil and storm called FTD rolled into Debbie’s life,
she sought shelter and guidance. And she found it in AFTD.
“I attended the International FTD conference in Indianapolis
in 2010 where I met Helen-Ann Comstock, founder of AFTD
and Beth Walter, the chair of AFTD at the time,” said Debbie.
“I found myself in a room full of people who truly ‘got’ the
disease…they understood the challenges that people like me-living with the disease--were facing. They were compassionate,
understanding, and more importantly, offering hope.”
Debbie joined the AFTD Board in 2010 and took leadership of
the Development Committee in 2012. In this role she, along with
her fellow board members, is charged with reaching out to others
to engage their support.
“I am in awe of what the board and staff of AFTD have
accomplished in just 10 short years,” she said. “It is truly
inspirational. But we won’t realize our vision of effective
diagnosis, treatment and cure without significant investment from
the broader community of families who have experienced this
disease. I urge everyone to join us to ensure we build upon the
exciting advances we are making. Share your story with others.
Write a check. Get involved.”
This past April, Debbie was elected vice chair of the organization.
“I am proud to be a part of AFTD. For Mike, for our children
and for all those who are living with this disease, we won’t stop
until we find a cure!”
AFTD News Briefs
There is a new FTD support group
in Albany, NY. Check AFTD’s website
for a complete listing of support groups
in the United States and Canada.
AFTD has added a new website
page devoted to webinars on FTD.
Under the “Healthcare Professionals Education Resources” tab, a page called
“webinars” contains informative
sessions from healthcare professionals
in the field of FTD as well as webinars
by AFTD staff. New webinars will be
added to this page regularly.
AFTD welcomes Lorene Schlie and
Charlene Martin-Lillie as regional
coordinator volunteers for the
Midwest region. If you live in the
Midwest and would like to learn more
about AFTD’s volunteer opportunities,
please contact the coordinator
overseeing your state.
Lorene: [email protected]
(Indiana, Illinois, Ohio, Michigan, Wisconsin)
Charlene: [email protected]
(North Dakota, South Dakota, Nebraska,
Minnesota, Iowa)
The Comstock Caregiver Respite
Program provides $500 grants to fulltime family caregivers for respite. More
information and the application form
are available on AFTD’s website.
AFTD volunteer Sally Winter has
written a guide to attracting media
attention for anyone who wishes to
promote a fundraiser or share their
story with the local media. Sally’s guide
can be found under the Volunteer page
of AFTD’s website. Many thanks to
Sally for sharing her expertise!
The Association for Frontotemporal Degeneration
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Volume X, Issue 2: Summer 2013
AFTD’s Salt Lake City Education Conference & Annual Meeting
O
n Friday, April 12, more than 200 people attended
AFTD’s education conference and annual meeting in
Salt Lake City, UT. AFTD proudly partnered with
the University of Utah and their Center for Alzheimer’s Care,
Imaging and Research to offer an informative day of support
and connections. Conference sponsors included: Presenting
Sponsor TauRx, Bristol-Myers Squib, Amide Bio, Healthcare
Realty Brokerage, Inc., Raymond Koenig and Silverado Senior
Living. In-kind sponsor Monson Engineering generously
printed the program booklets.
After
an
opening
welcome by outgoing
AFTD Board Chair
Beth Walter, the day
kicked off with an
update on FTD trends
and development by
Dr. Norman Foster,
director at the Center
Dr. Norman Foster of University of Utah for Alzheimer’s Care,
Imaging and Research at
& AFTD Executive Director
Susan Dickinson
the University of Utah.
Following Dr. Foster,
AFTD
Executive
Director Susan Dickinson and UCLA Nurse Practitioner Jill
Shapira presented an informative session on FTD drug trials.
Dickinson also led the annual meeting part of the conference,
highlighting the accomplishments and growth of AFTD in the
past year. A caregiver panel, led by AFTD Program Director
Sharon Denny, grabbed the attention of the attendees,
predominantly caregivers. Former caregivers Katie Brandt,
Mike Pope and Bonnie Shepherd answered questions about
Former caregivers Katie Brandt, Mike Pope and Bonnie Shepherd
share their experiences
their experiences caring for a spouse with FTD in a powerful
segment of the afternoon.
Breakout sessions focusing on the different stages of diagnosis
took place during the heart of the afternoon, followed by a
Q&A session with three experts—Dr. Martin Freimer, Dr. Jill
Shapira and Dr. Edward Zamrini—in the field of FTD.
Keynote speaker and former AFTD Board Member Darlene
Ryan spoke on the topic of Reflections from a Survivor. As a former
caregiver to her husband who passed away from FTD, Darlene
spoke about the difficulties of trying to balance running a
business, caring for her ailing husband and raising a young boy.
AFTD Board of Directors hosted a dinner reception for caregivers,
professionals and AFTD staff to network with each other.
Materials from the Salt Lake City conference can be found on
AFTD’s website under “Support and Resources” then “Past
Conferences.” AFTD’s 2014 conference is set for March 14 in
White Plains, NY.
AFTD Inaugurates a New Board Chair
O
n Sunday, April 14, AFTD’s Board of Directors elected a new chair to
its helm. Jary Larsen, Ph.D., accepted the leadership role from outgoing
Board Chair Beth Walter.
Jary, who is a neuropsychologist and who has a personal connection to FTD, has been
an active part of the board since 2010. He has served on the research, advocacy and
audit committees, and most recently acted as chair of the governance committee of
AFTD, where he spearheaded the rewriting of AFTD’s by-laws.
“Jary brings a wealth of knowledge, both personal and professional, to the role of
AFTD Board Chair,” said Beth Walter. “I am very confident that under his leadership,
our organization will continue to develop its strategy of progressive, efficient and
effective growth in pursuit of our mission of Care and Cure.”
Former and present AFTD Board Chairs
Beth Walter and Jary Larsen
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The Association for Frontotemporal Degeneration
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Volume X, Issue 2: Summer 2013
AFTD Welcomes Nadine Tatton, Ph.D. to Staff
O
n July 1, AFTD welcomed Nadine Tatton, Ph.D.,
as scientific director. A seasoned research and
development advisor, Dr. Tatton brings more than 20
years of experience in basic science and translational research,
technology transfer and business development. Her arrival
signals an expansion in the research side of AFTD’s activities,
as the position of Scientific Director grows from half time to
full time.
Dr. Nadine Tatton
NAPA
“We are thrilled to bring
Dr. Tatton on board to
lead our research efforts,”
said Susan Dickinson,
AFTD executive director.
“In addition to managing
our grant programs,
much of her activity
will focus on further
developing AFTD’s key
relationships with industry,
academic scientists and
government.”
One key area of responsibility will be to facilitate the work
of the FTD Treatment Study Group, a collaborative effort
among leaders in academia, corporate science, government
and nonprofits, all dedicated to speeding the path to the first
approved drugs for FTD.
Dr. Tatton received her Ph.D. in Physiology (Neuroscience)
from the University of Toronto, and has worked as an
academic scientist, developing a potential therapeutic
compound for Parkinson’s disease at a biotechnology startup
company focused on nanotech drug delivery platforms, and
most recently as a lead in the technology transfer department
at the University of Ottawa. She has a successful track record
of building collaborations among scientists from a variety of
backgrounds and also appreciates the unique role AFTD can
play at the interface of the scientific and caregiver worlds.
“I am delighted and honored to be a member of the AFTD team,”
said Dr. Tatton. “These are exciting times in neurodegenerative
diseases research, and I believe patients and caregivers alike will
benefit from new discoveries and partnerships driven by AFTD’s
commitment to frontotemporal degeneration.”
(cont. from page 1)
panel, or were involved in setting the workshop agenda relevant
to FTD research. This included: a session on the importance
of accurate diagnosis led by Dr. Dave Knopman from the
Mayo Clinic Rochester, and Dr. Bruce Miller, Director of the
University of California, San Francisco (UCSF) Memory &
Aging Center, and a half-day session focused on FTD led by
Dr. Michael Hutton of Eli Lilly and Dr. Bill Seeley of UCSF.
“We were immensely proud to partner with NIH, NAPA and
more than two dozen scientific and clinical experts to shine the
spotlight on the challenges and opportunities that FTD presents
within the larger scope of the NAPA plan,” said AFTD Board
chair Jary Larsen, Ph.D.
The FTD session resulted in an array of recommendations
and priorities for basic and clinical research. These and all
other recommendations from the workshop were compiled
and finalized by the planning committee, which includes
AFTD’s former Scientific Director, Sharon Hesterlee, Ph.D.
Dr. Hesterlee will present the FTD recommendations to the
NINDS Council at their next meeting in September. From there
they will go to the NAPA advisory council to be incorporated
into the third draft of the National Plan to Address Alzheimer’s
Disease to be released in the summer of 2014.
The National Plan lays out the strategy by which NAPA
will achieve its goal of treating and curing Alzheimer’s
disease and related dementias by 2025. The plan is updated
annually, and coincident with the release of each new draft, the
Secretary of the Department of Health and Human Services
(HHS) makes funding requests to Congress. “This is when our
work as advocates will really begin,” noted Larsen. “AFTD will
be coordinating the voices of both professionals and families
to ensure that the work done during the May 2013 workshop
ultimately gets translated into action, in the form of research
dollars to benefit FTD patients and families.”
Thus far, the NIH workshop is the landmark event to arise from
AFTD’s involvement in the National Alzheimer’s Project. Over
the past 18 months, AFTD has taken several opportunities to
engage with members of the NAPA advisory council and staff
at HHS to ensure that FTD receives significant attention.
•
Early in 2012, AFTD MAC Chair Dr. Marsel Mesulam
and Executive Director Susan Dickinson submitted public
comments on an initial draft of the National Plan to the
NAPA advisory council. In their comments, they called
for FTD to be explicitly included as one of the diseases
targeted for a cure by 2025. In response, the draft of the
National Plan released in May of 2012 explicitly defined
the term “Alzheimer’s disease” as inclusive of FTD and
the other related dementias whenever used in the National
Plan.
(cont. on page 7)
The Association for Frontotemporal Degeneration
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Volume X, Issue 2: Summer 2013
Do You Like to Eat?
Wanna Raise Some Awareness of FTD?
We’ve Got Just the (Meal) Ticket!
What: AFTD’s 1st Annual “Food for Thought” Campaign: Make a meal and invite family/friends, host a bake/cider sale or engage a local
restaurant to give back a portion of a night’s sales to AFTD.
When: Any day from September 29 - October 6: We’re concentrating our campaign around one week in an effort to garner national press
surrounding FTD. The more Food for Thought events we have across the U.S. and Canada, the better! Or plan to attend our Philly Food for
Thought Event at Susanna Foo’s in Radnor on October 11!
How:
Share AFTD’s Food for Thought campaign with friends and family, or
plan something yourself. Anything that involves food and a little FTD
education is just the ticket. Volunteers are ready to guide you through the
process.
Our goal is to have at least one event in each of the 50 states and five in Canada. Put
your city, state or province on the map as we reach for awareness across the nation!
For complete details and to RSVP, visit AFTD’s Food for Thought webpage:
http://www.theaftd.org/about/aftds-food-for-thought
5
6
The Association for Frontotemporal Degeneration
Donations Honor Loved Ones
In Honor Of:
Ross Abinanti
Bill Allen
Michael Angello
Louis Audette
Drew Basham
The Basla Family
Linda Bernardin
Betty Biggins
Joy Bowen
Janine Briggs
Charlie Brolin
Karen Keller Colby
Kathryn Decker
Tony DeMark
Ben Dipzinski
Barry Driscoll
Diane Doty
Kathleen Earl
Gail Edwards
Diane Fitzgerald
Detlef Frey
Steve Gebhardt
Vicki Glandon
Ilene Greenstone
Alice Guiney
Alice Hale
Donna Harold
John Heizman
Ray Horner
David Johnson
The Jones Family
Patricia Kanashiro
Walt Karski
Donna Klinedinst
Kelly Koenig
Keith Kreizel
Hedy Lamar-Santana
Arnette Lester
Emily Levy
Elliot Levy
Marvin Lowman
Robert Matusiak
Jennifer McConathy
Bunny McMurrer
Louise Miller
Curtis E. Moore Jr.
Ben Morris
Judy Mulik
Marie Nichols
Joseph Ogborn
Patricia O’Neal
Joseph Pessah
Renee Petrola
Anna Pontrelli
Daniel J. Powell
Richard Prescott
Joe Prieskorn
Roy Riney
Betsy Rossi
Kathy Savini
David Scaggs
Jackie Schneider
Russell Schubert
Larry Scott
Joanne Silva
Roberta Sitler
Peter Smith
Ellen Solomon
Barbara and Robert
Spacek
Arleen Swett
John Thompson
Steve Tipton
Ellen Trosclair
Ira Tyler
Jerome Untiedt
Bruce Viemeister
Jane Ward
Vahl Warren
Doris Williams
Kaye Wilson
Judy Windhorst
Diana Winoker
David Wolfram
Caitlin Woolsey
Dan Woolsey
Richard Wright
Stuart Zuckerman
n
Volume X, Issue 2: Summer 2013
Gifts received from Feb. 1, 2013 - June 15, 2013
In Memory Of:
James Abbott
Glenn Andrews
Nadia Aquilino
Linda Arolfo
Raymond Atkinson
Anna Held Audette
John Auld
Emerson Avery
Mary Theresa Aylward
Marcelo Bailliet
Joan Banks
Bill Basile
Barbara Basla
Mary Bear
Frederick Mark Bell
Steve Benesh
Paul Berte
David Bingham
Mary Bingham
Catherine Birkinbine
Sondra Birnbaum
Sandra Bishop
Robert Blair
Genevive Blaise
Michael Brandt
Peggy Jane Ross Braswell
Rosie Braun
Carolyn Brockman
Stu Bryant
JoAnn Bryant-Newtson
Lyn Burke
Cindy Cardosi
Janeice Carlisle
George Carlson, Jr.
Raymond Carmichael
Camilla Checchio
Evelyne Cleiftie
Larry Cline
Phyllis Coats
Richard Lee Coleman
Mary Cottonaro
Van Daniels
Tony DeGennaro
Wilfred Denise
Axel Dikkers
Francis Dirksmeier
John Dombrowski
Jim Doran
Diane Doty
Allan Duckworth
Judith Dunham
Gwenn Dunn
Warren “Scott” Edmonson
George Edwards
Janice Ehrmann
Mary Einhorn
Linda Lee Ellis
Frank Engelkraut III
Linda Evec
Anne Farrell
David Floyd
Robert Fondale
Mimi Oblinger Freeman
Laurena Friedel
William Gallagher
Robert Garis
Jack Gerbracht
John Gibbs
Jane Goldner
Bernard Goodman
Herschel Green
Patricia Griffin
Grover G. Grimm
Dave Gustafson
Mary Gutierrez
Mary Hall
Bob Harshbarger
Therese Hartlett
William Hembel
Beverly Hill
Trent Hill
Linda Hubbard
Judy Hummel
Roger T. James
Betsy Jenkins
Karen Stevens Jones
Richard Kennedy
Billy Keyes
Ralph Klein
Rita Kornichuk
The Association for Frontotemporal Degeneration
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Volume X, Issue 2: Summer 2013
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AFTD is grateful for these gifts, which fund research, education and support.
Randy Kramer
Judith Krueger
Diane Kukac
Roy G. Lamb, Jr.
Peter Larsen
Marlyn Lawrentz
Charles A. Lawson, III
Larry Leifer
Linda Hubbard Lemon
Debi Lewis
Thomas Long
Dennis E. Lukasiewicz
Phyllis Malloy
Paul Marcucci
William Carey Marcucci
Susan Marcus
Gloria “Glo” Marquis
Ron Martling
Sheryl Mathews
Ed McAndrew
Martha McConnell
April McKenzie
Anna McNeil
Anthony Mitchell
Dennis Mixdorf
Roy Howard Montgomery
William Montgomery
Linda Murrow
Richard Muscarella
Charles Oar
Terrance O’Connor
Yolanda Palmieri
Kathy Peavey
Therese Petersen
Brent Leland Phillips
Seymour “Sy” Pikofsky
David Pitchko
Jeannette Polinski
Bill Proett
Alan Rasmusson
Ian Ravenscroft
Doug Reis
Cary Riecke
Mildred Roberts
Stanley Roboff
Allen F. Rocco
Carol Rosey
Shirley Royer
Sharon Stanton Russell
Dick Ryan
Ilona Salmon
Dennis Sauer
Diane Schaef
Helen Carole Schaefer
Erma Schaming
Barbara Schenkenberger
Jaci Schiffern
Richard Schonbachler
Rachel Schulman
Jean Serpell
Rex Sessions
John Skowronski
Mildred Sliclen
Deborah Smachetti
Arthur Spehler
Brian Stebbins
Nancy Stein
Karen Stevens-Jones
Elizabeth Stonko
Robert Stuckrath
Joan Stuit
Marianne Sultana
David Sundin
Edward Swift
Robert Sykes
Albert Sylanski
Joyce Elizabeth Tate
Alan Thelwell
Norine Thomas
Haven Toothman
Carol Tyler
Stephen Umin
Richard Van Dyke
Richard Verrette
Patty Vreeland
Richard Wasserman
Christine Cain Weaver
Libby Webb
Minnie Weiner
Rosemary “Cookie”
Weiten
Sunny Lynne Joffe Wergen
R. David Westmoreland
James Witte
Glenn Yawger
Al Zimmerman
Robert Zimnich
Jack Zlotnick
In lieu of flowers...
Families who wish to direct memorial donations to AFTD are encouraged to call the office. AFTD can mail you donation
materials, or you can download them from the AFTD website. All donors will receive letters of acknowledgment, and families
will receive a list of donors. To contribute electronically via our website, go to www.theaftd.org.
NAPA
•
•
•
(cont. from page 4)
Last fall, AFTD Program Director Sharon Denny
provided input to NAPA’s Specific Populations Task Force
on the needs and challenges of people with young-onset
dementia. The task force released a report this past March
summarizing the information they received from AFTD
and other professional organizations and translated their
findings into action items for the second draft of the
National Plan, released this past June.
In August, AFTD will collaborate on a webinar to educate
providers of aging services across the country about
younger-onset dementia. This webinar is one of a series
sponsored the HHS in accordance with action items set
forth in the NAPA plan.
AFTD Program Coordinator, Matt Sharp, has been
attending the public NAPA advisory council meetings in
Washington, DC since last summer. At each meeting, he
has provided public input on how NAPA can best meet
the needs of the FTD community. Matt has recently been
joined by AFTD Board Member Pop Shenian, and the
two will continue to attend the quarterly meetings, engage
council members and comment on behalf of the FTD
community.
Be Heard!
AFTD is looking for caregivers and individuals diagnosed with
FTD to join us at the quarterly meetings of the NAPA advisory
council in Washington, DC. Stand up to share your story and
ensure that FTD is included in all aspects of funding for the
NAPA plan. For more details, contact Program Coordinator
Matt Sharp, MSS at [email protected] or 866-507-7222.
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The Association for Frontotemporal Degeneration
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Volume X, Issue 2: Summer 2013
The Importance of Respite and Respite Grants
T
here is an army of family caregivers in our country,
and there’s a good chance their health is at risk. Reams
of statistics bear out that the demands of caring for a
loved one with a difficult illness are deep and wide. As some
caregivers know and others must be reminded, a little break
can go a long, long way.
Many caregivers with parents or spouses with FTD have
taken advantage of AFTD’s Comstock Caregiver Respite
Program, developed in 2009 to provide
small grants for full-time caregivers. They
sing its praises. Since its inception, at least
45 grants of $500 each have been awarded
each year and used in myriad ways to help
caregivers catch their breath and find some
respite. That number now stands at 90 per
year.
Catherine Montgomery’s husband, Robb,
was diagnosed with FTD in 2010. Two
years later, he had a stroke and she made
significant changes to their home to
accommodate his physical issues. Though
her six adult children are helpful, they are
scattered around the globe and, week to
week, it falls to her, at age 79, to provide
the bulk of Robb’s care.
For Elaine Soloway, the AFTD grant enabled her to take a
similar kind of break. She used it to hire two young adults
to spend time with her husband, Tom Madison, who died in
November 2012, just three years after being diagnosed with
primary progressive aphasia.
“He was physically very able but one day, he came home from
a particular bike ride with some bruises and scrapes. I didn’t
know what happened and I decided he shouldn’t ride alone
any longer,” she said.
“I was concerned he wouldn’t accept
the caregivers,” Elaine continued. “I was
scheduled for hip replacement surgery and
I told him they would help me during my
recovery, not wanting to have him think I
doubted his ability. But I shouldn’t have
worried. He accepted them right away and
even looked forward to their visits. We came
to be so fond of them.”
The young man Elaine hired came twice a
week to drive Tom to the YMCA. Later, she
hired a young lady to drive for him, taking
him to the putting green or accompanying
him on bicycle rides. A public relations
professional, Elaine developed a blog to share
her experiences as a full-time caregiver. It is
“I had to overcome my reluctance to
entitled “The Rookie Caregiver.” In the entry
Former caregiver, Elaine Soloway
say, ‘I need help,’” said Catherine, who
describing the glories of having hired the two,
had experienced the value of caregiving
young adult companions to give her a break,
assistance when Robb’s hospice- and Medicare-provided she described the time as “a sublime four hours to myself.” That
professionals helped intermittently with his care.
particular entry is entitled “The Kids Are All Right.”
“I had accepted the offer of a kind neighbor to come on
Sunday mornings so I could attend church where I’m a song
leader, she said. “But when I applied for the grants, it was
actually a financial decision. I saw the article about the respite
grants in the AFTD newsletter. I wrote the simple request
and was so happy when it was granted.”
As Catherine and Elaine discovered, applying for the grants is
a simple process. The application can be downloaded from the
AFTD website. The funds can be used to help full-time, unpaid
caregivers arrange short-term daytime or overnight care for
loved ones diagnosed with FTD. Caregivers decide how to best
use the funds based on their situation and needs.
Catherine uses the respite funding to bring in a paid caregiver
twice a week. She uses the time to go grocery shopping, do
the banking, see her doctor or get a haircut.
There are few requirements other than having a loved one who
has a documented diagnosis of FTD. People who received a
grant in previous years are welcome to apply again. In fact, about
half of all grantees have received grants previously. Beginning
July 1, there will be 90 grants available to applicants.
“I sometimes wish I could use the four hours the caregiver
is here to just go in my room to take a nap. But my husband
defers to me if I’m home. I make the best of it,” she said,
describing the peaceful escape she has created in her home –
a room where she writes and paints. “You just have to be
creative.”
The Comstock Caregiver Respite Program is funded through
the generous donations of contributors who know how
“sublime” a little break can be.
Contributor Elaine Rose is a writer and caregiver to her husband with FTD.
The Association for Frontotemporal Degeneration
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Volume X, Issue 2: Summer 2013
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What to Do About...Roaming
P
eople with memory impairment wander. People with FTD
roam. Such was the case with Jay. He was diagnosed with
behavioral variant FTD at age 48. When he became unable
to manage the family business, he turned it over to his sons. Jay
began to spend his days riding his bike to the office, about five miles
from home. As his disease progressed, he repeated his visits about
10 times each day. He rode to the office, looked at family pictures in
his sons’ offices and bicycled home. He never became lost.
Over time, Jay faced more safety risks as his judgment declined. He
became less aware of stop signs and traffic when he biked, so his
family “lost” the bike. At their summer place, Jay began to visit
other cabins when he walked. He would go into unlocked homes,
go to the refrigerator, open a bottle of wine and sit in the living
room. Not all of the neighbors were understanding. Back home
he walked for hours each day within their gated community, always
following the same route.
Jay’s behavior is an example of roaming, which is more routinized,
repetitive and purposeful than wandering. In Alzheimer’s disease,
individuals may become disoriented. They may forget where they
are going and become lost.
In FTD, there seems to be a need for the pacing, especially
for someone with a physically active lifestyle. Roaming and
pacing appear to be linked to restlessness and stress in the
environment (too much noise, people, etc.) or compulsive
behavior common in FTD. Trying to stop or prevent the
person from walking results in other disruptive behaviors.
It is more effective to shape the behavior in adaptive ways over
time that allow the person to remain active and safe. Arrange
for the person to walk outside to where they want to go as
much as possible. Ensure that he has proper walking shoes
that fit well and monitor feet for blisters. Incorporate daily
walks into the care plan and enlist volunteers and family to
help.
“What to Do About...” is a new tool added to AFTD’s Partners
in FTD Care e-newsletters for health professionals. It has
practical tips to help direct care staff and family members
manage care. To read “What to Do About...Roaming,” visit
the Spring 2013 Partners in FTD Care newsletter under
“Newsroom” on AFTD’s website.
Giving a Hand to Our Helping Hands!
A
FTD truly appreciates our vast array of volunteers from
across the United States and Canada. They offer unique
talents, experiences and qualities that combine to make
a strong volunteer network for AFTD. In New England, one
volunteer stands out for her commitment to supporting other
caregivers and increasing FTD awareness. Barbara Neufeld is an
AFTD volunteer who conducted outreach facility visits this past
winter and co-facilitates the Boston area FTD support group.
“Barbara is consistently reliable. This is amazing considering that
she juggles so many roles: caregiver to her husband, professional,
volunteer and friend. Wearing several hats, she is still able to
follow through, which is important and reflects her dedication
and commitment.” said Katie Brandt, New England regional
coordinator volunteer.
Barbara became involved in facility outreach because she realized
the need for FTD awareness based on personal experiences
with her husband and the challenges she faced firsthand.
Connecting with facility staff was easy for Barbara because of
her professional skill set. Her frontline knowledge of what
caregivers and staff needed to support FTD patients made the
experience meaningful.
Barbara’s husband was diagnosed with FTD/PPA in December
of 2007. The diagnosis helped explain what had been going on,
but it left them unprepared
for what would come. As
her husband Eddie’s abilities
declined and daily interactions
became more frustrating,
Barbara realized she needed
help. She found the Boston
area FTD support group online
and went to her first meeting
four years ago this past June.
It was clear immediately to
Barbara that this group would
be a resource emotionally and AFTD Volunteer Barbara Neufeld
and husband Eddie
that it could provide her with
practical ideas.
When the support group needed a new facilitator, Barbara
stepped up and volunteered. She wants to help members stay
strong and maintain their ability to support their loved one with
FTD. “Facilitating the FTD support group enables me to do
something positive for others and for myself. As such, it is a
rare opportunity, one I’m glad has come my way,” said Barbara.
AFTD is very grateful for Barbara’s awareness efforts and
her willingness to support and be there for others facing such
challenging circumstances.
10
The Association for Frontotemporal Degeneration
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Volume X, Issue 2: Summer 2013
Awareness: If You Tell Your Story, They Will Listen
I
n the past two months, several members of the AFTD
community have had the opportunity to tell their story
about life with FTD in very public ways.
On May 19, two members of AFTD’s Medical Advisory
Council (MAC), Dr. Ted Huey and Dr. Chiadi Onyike, created
and hosted a full-day continuing medical education course on
FTD for psychiatrists at the American Psychiatric Association
meeting in San Francisco. In addition to several FTD experts
from a variety of fields, AFTD Executive Director Susan
Dickinson was present to show It Is What It Is (AFTD’s
18-minute documentary chronicling four families’ journeys
with FTD). AFTD Board Chair Jary Larsen also took part by
sharing his own family’s story of an inherited form of FTD.
“As physicians, we can lecture on statistics, symptoms and
clinical profiles, but it is the human stories of what FTD does
to a family that convey what this disease is really about,” said
Huey. “And it is stories like these that will compel professionals
to do something about it.”
AFTD’s Volunteer Regional Coordinator for New England,
Katie Brandt, shared her family’s story on June 13th at
the New England Journal of Medicine Clinicopathologic
Conference (CPC) at Massachusetts General Hospital. The
Grand Rounds for this conference were coordinated by AFTD
MAC member Dr. Brad Dickerson and focused on the case of
Katie’s husband, Mike, who was diagnosed with FTD at the
age of 29. Presented in Massachusetts General’s historic Ether
Dome, this CPC was attended by more than 80 neurologists
and related clinicians. University of California, San Francisco
Memory and Aging Center Director Dr. Bruce Miller provided
insight for attendees on how to diagnose a case like Mike’s.
Dr. Miller drew attention to red flags in Mike’s case history,
showing changes in character and personality as well as new
obsessive behaviors and declines in professional and academic
performance that would warrant further investigation. While
Dr. Miller focused on the clinical aspects of FTD, it was Katie’s
presentation that humanized the story. At the conclusion of
her speech, Katie received a standing ovation.
Katie reflected on her highly unusual opportunity to speak at a
CPC: “I knew this was an opportunity to reach out to clinicians in a
powerful way. I talked about the challenges of taking Mike from one
clinician to the next, receiving eight misdiagnoses before bringing
him to Boston. I talked about the man that Mike was before FTD,
shared family photos and told our love story. And I am hoping that
all those pieces together will make Mike a memorable case that each
medical professional will use to enhance their practice and make the
road a little easier for future families dealing with FTD.”
On the same day as Katie’s speech in Boston, NBC aired John and
Barbara Whitmarsh’s story on NBC Nightly News with Brian Williams
(see feature story, page 1). Through a team effort of committee
members, AFTD staff, AFTD board members and the excellent
reporting of former NBC Chief Science and Health Correspondent
Robert Bazell, John gave insight to the millions of viewers who had
never before heard of FTD about what it’s like to live with this
disease. This prime time, national exposure was a huge opportunity
to create awareness of the disease. Within the next few days after
the airing, AFTD’s website hits were up 222%, HelpLine calls
increased significantly (and have not lessened since) and its social
media pages saw marked increases in “likes” and comments.
Without question, sharing a very personal, difficult part of one’s life
requires tremendous strength and courage. But as evidenced with
these three stories, the ripple effect of giving voice to a disease that
steals the voice of so many is exponentially powerful in creating
awareness.
Use AFTD’s brand new guide--Tips for Attracting Local
Media--written by volunteer Sally Winter to pitch your story
to the media, host a Food for Thought event the first week of
October or simply share some FTD awareness bracelets with
people you meet. Together, we’ll raise a collective voice…and
Fight This Disease.
AFTD-Team: 2nd Annual “With Love” Campaign
A
FTD kicked off its second annual “With Love” campaign
in January. Families and friends of people affected
with FTD shared their stories in an online fundraising
web page to raise not only funds for AFTD’s mission but also
awareness of the disease. Centered around Valentine’s Day, “With
Love” is about all kinds of love stories—parent to child, child to
parent, spouse to spouse, friend to friend. The main campaign
page featured the story of siblings Alice and Arpy Saunders, and
their goal to raise FTD awareness in honor of their father who is
affected.
This year, there were $21,000
in matching gifts from The
Walter Family Foundation, The
Rainwater Charitable Foundation
and Lee Danis. By the middle of
March, the campaign had raised
more than $55,700—more than $5,000 beyond its goal of $50,000.
AFTD would like to thank everyone who created their own “With
Love” story and our matching donors who gave a voice to FTD.
The Association for Frontotemporal Degeneration
n
11
Volume X, Issue 2: Summer 2013
aftd
the
- team
H’Art Song Raises $24,590
On February 21, artists from the Hartsville, SC area put on
a performing arts show at the First Presbyterian Church –
Black Creek Arts Gallery to raise money for AFTD’s mission.
The evening, which was organized by Anna Hill in memory
of her late husband Trent, began with a performance that
included operatic soloists, instrumental musicians, a vocal
ensemble and original poetry that reflected the caregivers’
experiences. The performance was followed by a cocktail
reception that included a silent auction of artwork by
local artists. Artwork included watercolors, oil paintings,
woodworks (hand-built dulcimers and ukuleles), pottery and
sculpture. The event raised $24,590 and was attended by
approximately 200 people.
Cocktails for a Cause
Members of the Leifer family hosted a “Cocktails
for a Cause” fundraiser benefitting AFTD on
May 11 at EVR Lounge in New York City. Tara
Leifer’s father recently passed away from FTD,
and the event was held in his memory. More than
100 people attended the soiree, which featured
cocktails, a silent auction and raffle. Between the
event and the Givezooks! online fundraising page,
the Leifers raised $2,531.
>> Mother and daughter
Sandy and Tara Leifer at
Cocktails for a Cause on
May 11 in
New York City.
AFTD Staff & Friends Walk the Walk
On Sunday, May 19 more than 60 people, including AFTD
staff, board and former board members, and walkers/runners
came out to participate and support the “AFTD-Team” in a
5K and 10-mile run/walk in King of Prussia, PA. Several
local families participated in the event, including the HagerMellor clan and the Travis family, who have four family
members who have been affected with FTD. Together, the
participants raised $6,392—well over the $5,000 goal—and
received two awards from the event organizers for best team
times in the 5K and 10-mile.
<< The Travis family
participated in the KOP
10-Miler/5K on May
19 with their own team
shirts, honoring four family
members.
Cape Trinity “FTD” Day
On June 4, more than 300 elementary students,
teachers and staff of Cape Trinity Catholic in
Wildwood, NJ held a dress-down day in memory
of Bob Hartman, grandfather to students Isabella
and Olivia Pasciucco. The school raised $576 for
FTD research, and everyone wore red-and-white
apparel as well as FTD awareness bracelets to
show support and raise awareness of FTD. Bob’s
daughter, Ingrid Hartman-Pasciucco, organized
the event at Cape Trinity.
>> The Hager-Mellor
clan joined AFTD for
the second year in a row
for the race.
Students at Cape Trinity
The Association for Frontotemporal Degeneration
n
Volume X, Issue 2: Summer 2013
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Board of Directors
n
phone: 267.514.7221
n
toll-free phone: 866.507.7222
Medical Advisory Council
Deanna Angello, M.B.A. Sylvia Mackey
M.-Marsel Mesulam, M.D.
New York
Maryland
Chair, Northwestern University
Earl Comstock, Esq.
Linda Nee, LCSW-C
Bernardino Ghetti, M.D.
Washington, D.C.
Maryland
Vice Chair, Indiana University
Helen-Ann Comstock Lisa Radin
Bradley F. Boeve, M.D.
Pennsylvania
Nevada
Mayo Clinic, Rochester
Amy Kamin
Popkin Shenian
Tiffany W. Chow, M.D.
New York
Pennsylvania
University of Toronto
Francine Laden, Sc.D. Bonnie Shepherd
Bradford C. Dickerson, M.D.
Massachusetts
Utah
Harvard University
Emily Levy, M.B.A.John Whitmarsh, Ph.D. Dennis W. Dickson, M.D.
Massachusetts
California
Mayo Clinic, Jacksonville
Karen Duff, Ph.D.
Columbia University
Jill Goldman, M.S.
Susan L-J Dickinson, M.S.
Angie Maher
Columbia University
Executive Director
Communications Manager
Murray Grossman, M.D., Ed.D.
Sharon S. Denny, M.A.
Pam McGonigle, M.A.
University of Pennsylvania
Program Director
Development Manager
Edward Huey, M.D.
Nadine Tatton, Ph.D.
Matthew Sharp, M.S.S.
Columbia University
Scientific
Director
Program Coordinator
Michael Hutton, Ph.D.
Kerri Barthel, M.S.
Elizabeth Neal
Eli Lilly & Co. UK
Volunteer Manager
Development & Marketing Asst.
David S. Knopman, M.D.
Michelle Leahy
Mayo Clinic, Rochester
Office Manager
Jary Larsen, Ph.D.
Chair, California
Debbie Fenoglio
Vice Chair, Colorado
Bryan Dalesandro
Treasurer,
Pennsylvania
Susan Eissler
Recording Secretary, Texas
Beth Walter
Past Chair, California
Staff
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
Chiadi Onyike, M.D.
Johns Hopkins 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.