New Tool is Approved to Help with Diag-
nosis of Parkinson’s
The US Food and Drug Administration
(FDA), on January 17, approved the use of
DaTscan, a novel imaging technique that
can be used to help diagnose Parkinson’s
disease (PD) in its early stages. The tech-
nique, which combines the injection of an
iodine-based radioactive chemical with an
imaging process (known as “SPECT”)
that detects and measures the presence
of dopamine, has been used successfully
in Europe for more than a decade.
What is DaTscan and what does it
mean for you? To find out, PDF News &
Review recently posed some of your
questions to our Director of Research
Programs, James Beck, Ph.D.
Q: What is DaTscan?
Dr. Beck:
DaTscan is an imaging technol-
ogy that uses small amounts of a radioac-
tive drug to help determine how much
dopamine is available in a person’s brain.
A machine similar to but smaller than an
MRI machine, called a “single photon
emission computed tomography ma-
chine,” or SPECT scanner, measures
the amount and location of the drug in
the brain.
N E W S & R E V I E W
S P R I N G 2 011
www.pdf.org/science_news
What
Does it
Mean?
Wondering what the
latest Parkinson’s head-
lines mean for you?
Read PDF’s take on
scientific studies by visiting
our online science news.
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Adjusting to a PD Diagnosis
Support for Care Part-
ners, Family and Friends
Making Treatment Choices
PD Organizations and Communities
PD Organizations and Communities
P
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Joining a Clinical Trial
Understanding Parkinson’s
Living with Parkinson’s
Parkinso
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Disease
Facts
About
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Diagnosis
Parkinson’s disease:
You are
not
alone
Do you want to know more
about Parkinson's?
Order today from PDF's line of
free print and video materials.
Call (800) 457-6676 or visit
www.pdf.org/publications
Health care professionals and support group leaders are encouraged to order multiple copies for their patients and members.
PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N
9
N E W S & R E V I E W
S P R I N G 2 011
The Advocate Report:
Sue Dubman of Massachusetts
What is one way to help accelerate the develop-
ment of new therapies for Parkinson’s disease (PD)?
As Robin Elliott, Executive Director of the Parkinson’s
Disease Foundation (PDF) noted
in the last issue of this newsletter,
it is through “pairing” people
with Parkinson’s — trained re-
search advocates — with people in
government, science and industry
to improve the process that brings
us new medicines.
Over the past few years in
News & Review, we have pro-
filed several of the 100 individuals from 36 states who
comprise PDF’s Parkinson’s Advocates in Research
(PAIR) program. One welcome addition to this group
of research advocates is Sue Dubman, of Boston, MA.
For the first year
after Ms. Dubman re-
ceived her diagnosis of
Parkinson’s in 2008,
she said she “floated
down the river of ‘de-
nial!’” Yet it did not
take her long to get
involved with helping
the Parkinson’s com-
munity in a way that
powerfully leverages
her 15 years of profes-
sional experience in government, health, information
technology and clinical research. She works with or-
ganizations such as the Clinical Data Standards Inter-
change Consortium (CDSIC) on data standardization
— that is, on finding ways to coordinate data collec-
tion across research studies testing new therapies.
Ms. Dubman saw an opportunity when she read
about PDF’s three-day research advocacy training, the
annual Clinical Research Learning Institute. As she
describes it, “When I was at the National Cancer In-
stitute, I worked with many patient advocates so I was
already familiar with what they do and how impor-
tant they are. As a person with Parkinson’s, I have a
vested interest in wanting to see treatments to stop
progression and improve quality of life for people liv-
ing with Parkinson’s.”
She participated in the training in October 2010.
Today, just five months into her new role as a Parkin-
son’s research advocate, she has already found several
ways to impact data standardization for Parkinson’s.
She says that the problem is that Parkinson’s re-
searchers often collect and label data in different ways.
For instance, one study will define its young onset PD
participants as people younger than age 40, and an-
other will say they should be defined as everyone
under age 50. Down the road, there is no way to com-
pare and share information across studies because the
measurements are too different.
Ms. Dubman is also working to solve this problem
through her service with the Coalition Against Major
Diseases (CAMD)-
Critical Path Institute,
a nonprofit institute
which brings together
industry and govern-
ment agencies to im-
prove the development
of new therapies by
streamlining data. She
has also reviewed new
data standards created
by the National Insti-
tute of Neurological
Disorders and Stroke (NINDS) — a branch of the Na-
tional Institutes of Health (NIH) that funds PD re-
search — and provided her expert feedback on behalf
of PDF and the Parkinson’s community.
Why is this work important? As Ms. Dubman
puts it, “Data standards could speed up innovation, by
allowing scientists to focus on the bigger picture rather
than administrative details. We all want new treat-
ments more quickly, and this is one way to improve
the process.” As she uses her combination of profes-
sional expertise and personal dedication to the cause,
so does she help increase the voice of people with
Parkinson’s — exactly the aim of PAIR.
Sue Dubman
PDF’s Parkinson’s Advocates in Research (PAIR) program is a network of more than 100 research advocates from 36 states
who work to bring educated consumer voices to important issues in Parkinson’s therapy development. This growing
network is actively collaborating with scientists, government agencies and private industry to change the role that
people with Parkinson’s play in the design and implementation of Parkinson’s research and programs.
•
If you are a person with PD who would like to learn
more about becoming part of PAIR…
•
If would like to speak with PDF about partnering with
a research advocate at your institution, clinical study
or support group…
Then call us at (800) 457-6676; email us at info@pdf.org;
or visit us at www.pdf.org/pair.
Would You Like to PAIR Up for
Parkinson’s Research?
10
PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N
N E W S & R E V I E W
S P R I N G 2 011
PDF founder William Black with
his wife, Page Morton Black.
The Parkinson’s Disease Founda-
tion (PDF) is excited to announce a
new partnership with Chock full
o’Nuts, maker of the well-known
“heavenly coffee” and founder of the
restaurant chain.
PDF and Chock full o’Nuts share a
common history, having both been
founded by the late William Black (see the
PDF/Chock story below). Now, the two
are joining forces to fight Parkinson’s dis-
ease (PD), beginning with nationwide promo-
tions to raise awareness around the country about the
disease, the need to fund research for new treatments
and a cure, and the availability of educational resources
from PDF to help people manage their Parkinson’s.
This partnership will begin just in time for Parkin-
son’s Awareness Month this April and it is coming to a
community near you. Where should you look to find it?
•
Check your Sunday circulars on the weekend of
March 27 for a special coupon and advertisement pro-
moting Parkinson’s Awareness Month.
•
Check out the Chock full o’Nuts coffee cans in your
local grocery store. This spring, new cans will be fea-
turing information about PDF’s mission to fight
Parkinson’s disease.
•
If you live or work in New York City, or will be visiting
the city, you may notice Chock full o’Nuts trucks pro-
moting the fight against Parkinson’s and distributing
free coffee. You may also visit Chock’s coffee shops,
such as Chock 23 on West 23rd Street between Fifth
and Sixth Avenues, to see cups and other items with in-
formation inviting people to join the fight against PD.
Robin Elliott, PDF’s Executive Director, said of the
partnership, “PDF has been singularly committed to
finding the cause(s) and a cure for Parkinson’s disease
since that day back in 1957 when Mr. Black first found
out that his close friend and associate had developed
Parkinson’s, and realized to his amazement that there
were no effective treatments for the condition. We are
certain that Mr. Black would be happy to know that the
two businesses he founded are now partnering to push
forward progress toward these goals and we thank
Chock full o’Nuts for its support.”
1926
William Black opens his first
Chock full o’Nuts Shop in
New York City. He eventu-
ally opens more than 40
shops and switches his
focus from nuts to coffee,
but keeps the original name.
1952-1961
Mr. Black begins dis-
tributing Chock full
o’Nuts brand of coffee
in grocery stores.
1957
Mr. Black’s controller and
close friend was diagnosed
with Parkinson’s. Mr. Black is
appalled to learn that no truly
effective therapy is available,
nor is any basic research being
conducted on the disease.
1983
Page Morton Black, Mr.
Black’s widow and the well-
known singer of the Chock
full o’Nuts jingle, becomes
Chairman of PDF.
2011
PDF partners with the coffee company founded by Mr. Black
to raise awareness of Parkinson’s. PDF continues to fund a major
research program at Columbia University and also supports re-
search programs at Weill Cornell Medical Center, Rush University
Medical Center and the projects of individual investigators and
fellows around the world, as well as runs print and online
educational programs and research advocacy initiatives.
1957
Mr. Black sets up PDF to es-
tablish a research program
aimed at finding an effective
drug treatment for the dis-
ease. He makes two major
gifts: one to Columbia Univer-
sity to help build the research
laboratory with a floor dedi-
cated to Parkinson’s research;
the other to endow PDF.
Chock full o‘Nuts Partners with PDF to Fight Parkinson’s
The Story of PDF, Chock and William Black
The creation of PDF in 1957 by William Black, founder of Chock full o’Nuts, a successful New York coffee and
restaurant business, is in itself a story of support, good will and advocacy.
PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N
11
PDF N
EWS
N E W S & R E V I E W
S P R I N G 2 011
Advisory Council Member Raises $37,000
Nearly 200 music lovers and oth-
ers dedicated to the fight against Par -
kinson's disease (PD) gathered for the
8th Annual Music for Parkinson's con-
cert on December 5, at Rye Country
Day School in Rye, NY. The event, or-
ganized by Music for Parkinson's Re-
search, raised $37,000 in net proceeds
for the research programs of the Par -
kinson's Disease Foundation (PDF).
The afternoon featured perform-
ances by several leading chamber
music artists including John Stine,
Gena Raps and the Attacca Quartet.
After the concert, guests enjoyed a
wine and cheese reception and chatted
with the musicians.
Music for Parkinson's was
founded by three individuals, led by
David Eger, Ph.D., who has worked
with PDF for many years, in large
part as an inaugural member of PDF's
People with Parkinson's Advisory
Council, a group that advises the
foundation on its research, education
and advocacy programs.
Dr. Eger noted, “We were thrilled
by the support from friends, family,
community members and PDF staff
and board members who came to-
gether to help raise funds to find the
cure for this disease.”
MPR Founder David Eger, PDF Executive
Director Robin Elliott, PDF PPAC member
Rhona Johnson
PDF is pleased to honor:
Herbert Pardes, M.D.
President & Chief Executive
Officer of New York-Presbyterian
Hospital & New York-Presbyterian
Healthcare System
Tuesday, May 10, 2011
The Pierre Hotel
New York, NY
This award will be presented
at PDF’s annual gala,
Bal du Printemps
Tribute to PDF PPAC-ers
The Parkinson’s Disease Founda-
tion (PDF) mourns the recent loss of
two founding members of its People
with Parkinson’s
Advisory Council
(PPAC), Lillian
Snyder, of
Wheaton, IL and
Bruce Talbot, of
Moretown, VT.
PPAC was cre-
ated to provide
PDF with perspec-
tives on research-funding priorities,
community needs and ways to better
serve people living with Parkinson's
through education and advocacy pro-
grams. Ms. Snyder and Mr. Talbot
began their terms in 2006.
Ms. Snyder was diagnosed with
Parkinson’s in 1998. Among her vari-
ous contributions to PDF, she was an
advocate for educating others about
the disease. She wrote articles on how
to explain Parkinson's to grandchil-
dren and tips for moving to a new
home, and championed brain dona-
tion. She was also a member of PDF’s
Creativity and Parkinson’s Project and
her painting, "The Birch Tree," was
featured in PDF’s 2010 wall calendar.
Mr. Talbot was diagnosed with
Parkinson’s in 1994. He was best
known as the enthusiastic captain of
the PDF Pacers, at the annual Parkin-
son’s Unity Walk in New York. Dedi-
cated to helping those living with
Parkinson’s navigate its challenges, he
was a contributor to the PDF newslet-
ter, authoring, “Making a Move with
Parkinson’s,” in the Spring 2007 issue.
Mr. Talbot was one of the PPAC
members who lobbied PDF for the
creation of PDF’s
first Resource List.
He touched PDF’s
staff and board by
creating a “procla-
mation” thanking
PDF for being the
first organization
to have an advi-
sory board made
up of people affected by PD. His
book on his journey with chronic ill-
ness, The Heart of the Matter, will be
published posthumously.
PDF Executive Director Robin El-
liott noted, “Lillian was a true and
beloved friend of PDF whose paintings
and words brought hope to others.
Bruce is remembered for the kindness,
enthusiasm and grace that inspired
everyone around him. We will cer-
tainly miss both of these dear friends.”
Bruce Talbot
Lillian Snyder
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