N E W S I N B R I E F
>> Read more on page 2
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I N T H I S I S S U E
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Environmental Factors and Parkinson’s:
What Have We Learned?
News
Review
Get Involved in Parkinson’s
Awareness Month
2
Spotlight on Research
3
Legal Issues & PD: Medicaid
4
The Advocate Report: Sue Dubman
of Massachusetts
9
Advisory Council Member
Raises $37,000
11
Proteins May Travel from Cell to Cell,
Spreading Parkinson’s in the Brain
A new study suggests that a dam-
aged protein can spread from sick cells
to healthy ones in the brain, providing a
possible explanation for how Parkinson’s
disease (PD) progresses. The study ap-
pears in the January 19 online edition of
the Journal of Clinical Investigation.
In people with Parkinson’s, neurons
— the nerve cells in the brain that help
control the body’s movements — de-
velop clusters of a protein called alpha-
synuclein. When these proteins clump
together, they are known as Lewy bod-
ies, and these have been linked to the
cell death that triggers PD.
In earlier research, two separate
teams — one led by Patrik Brundin,
Ph.D., M.D., at Lund University in Swe-
den and the other led by Jeffrey Kor-
dower, Ph.D., at the Parkinson’s Disease
Foundation (PDF) Center for Parkinson’s
Research at Rush University in Chicago
— studied the brains of people with PD
who had received transplants of healthy
young neurons as a therapy. Both teams
found that the newly transplanted neu-
rons also developed Lewy bodies, sug-
gesting that they “contracted” PD from
Chock full o’ Nuts
Helps Fight Parkinson’s
See page 10 for full story
By Caroline M. Tanner, M.D., Ph.D.
Scientists generally agree that most
cases of Parkinson’s disease (PD) result
from some combination of nature and
nurture — the interaction between a
person’s underlying genetic make-up
and his or her life activities and envi-
ronmental exposures. A simple way to
describe this is that “genetics
loads the gun and environ-
ment pulls the trigger.”
In this formulation,
“environment” has a
very broad meaning
— that is, it refers to
any and all possible
causes other than those
that are genetic in origin.
The interactions between genes
and environment can be quite com-
plex. Some environmental expo-
sures may lower the risk of PD,
while others may increase it. Simi-
larly, some people have inherited a ge-
netic makeup that makes them more or
less susceptible to the effects of toxi-
cants, or poisonous agents, than oth-
ers. The effect of a combined exposure
can be greater — or lower — than a
single exposure. All of this means that
the particular combination of factors
leading to PD is likely to be unique for
each person. These combinations, in
different ways, may trigger a common
series of biological changes that will ul-
timately lead to the disease.
Scientists are beginning to tease
apart the non-genetic factors that influ-
ence PD risk. In particular, epidemiolo-
gists are working to identify
differences in the experiences
of people who develop PD,
compared to those who do
not. But identifying these
risk factors can be difficult.
And when we do identify
them, they serve only as
clues. They do not provide a
direct explanation for the cause
of Parkinson’s, so scientists must
supplement these population studies
with laboratory experiments.
The following is a list of some of
the risk factors for which we have
found some evidence of an association
with PD. For the most part, it is too
soon to make recommendations for
how to prevent Parkinson’s based on
this research. However, these results
may help us to understand the causes
of PD, and provide direction for future
research and therapy development.
April is Parkinson’s Awareness Month.
Over the years, you have told us that
the public needs to better understand
Parkinson's and we agree. This April,
join the Parkinson’s community in
shattering the myths of Parkinson’s by:
Shatter the Myths of Parkinson’s
this April!
PDF is offering a free 30-page 2011 toolkit with tips on ways to make
a difference this coming April. Order your free copy today.
2
PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N
News In Brief
Continued from page 1
the brain in which they were transplanted.
In the new study, Dr. Brundin and his
colleagues tested the idea that alpha-
synuclein can travel from one cell to an-
other. First, the team studied the process
in cell culture. They moved on to experi-
ments with mice with PD symptoms, that
showed excess alpha-synuclein in their
brains. The researchers transplanted
healthy neurons into the brains of these
mice and observed their effects.
Results
•
Alpha-synuclein did indeed move from
one neuron to another in both cell cul-
ture and in living animals
•
There is a specific mechanism by which
this travel takes place
•
When alpha-synuclein enters a healthy
neuron, it can initiate or “seed” the for-
mation of Lewy body clumps.
What Does it Mean?
This study aimed to assess the “con-
tagious protein” hypothesis of Parkin-
son’s, which theorizes that neurons may
“infect” other neurons with damaged
alpha-synuclein, a protein that seems to
be important in determining how PD de-
velops. In 1997, Stanley Pruziner, M.D.,
received the Nobel Prize for his surprising
discovery that some damaged proteins,
rather than live organisms such as
viruses, can be infectious. Damaged or
mis-folded proteins have since been im-
plicated in such conditions as mad cow
disease. The new study demonstrates
that alpha-synuclein is able to enter and
affect healthy neurons. It also suggests
that the protein may initiate the formation
of new Lewy body clumps which are the
hallmark of Parkinson’s. Much about the
nature of the alpha-synuclein “seeding”
process remains unclear. Additional re-
search is required to assess whether
alpha-synuclein “infectivity” is a cause of
PD disease progression, or is simply a
minor aspect of the disease itself. Lastly,
these results — if they are confirmed by
future studies — suggest that the toxic
form of alpha-synuclein should be seen as
a target of new therapies.
>> Read more on page 8
April is Parkinson’s Awareness Month
N E W S & R E V I E W
S P R I N G 2 011
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2011 CITY/STATE PROCLAMATION TEMPLATE
WHEREAS, Parkinson’s disease is a progressive neurological movement disorder of the
central nervous system, which has a unique impact on each patient; and
WHEREAS, according to the Parkinson’s Action Network, the Parkinson’s Disease Foun-
dation, the National Parkinson Foundation, the American Parkinson Disease Association
and the National Institutes of Health, there are over one million Americans diagnosed
with Parkinson’s disease; and
WHEREAS, symptoms include slowness, tremor, difficulty with balance and speaking,
rigidity, cognitive and memory problems; and
WHEREAS, although new medicines and therapies may enhance life for some time for
people with Parkinson’s, more work is needed for a cure; and
WHEREAS, increased education and research are needed to help find more effective
treatments with less side effects and ultimately a cure for Parkinson’s disease; and
WHEREAS, a multidisciplinary approach to Parkinson’s disease care includes local Well-
ness, Support, and Caregiver Groups; and
Sample Proclamation
21
Parkinson’s Awareness
Month Toolkit
APRIL 2011
one community
working for a cure
Spreading the Word…
•
Focus the media on PD! Use our press releases, statistics
and tips to help you tell your story.
•
Make Parkinson’s Awareness Month official in your state
or city, using a sample proclamation from the toolkit.
•
Hang up posters from PDF around your community to
publicize the need for a cure.
Educating Yourself & Others...
•
Shatter the myths of PD by participating in our video and
photo campaign at www.pdf.org/parkinson_awareness.
•
Join PDF’s PD ExpertBriefing,“What’s in the Parkinson’s
Pipeline?” by phone or online, on Tuesday, April 12.
•
Bring the Parkinson’s Quilt to your community, by renting
an 8’ by 8’ block to show the impact of PD.
Supporting the Cure...
•
Raise funds for research by joining our “30 in 30” Parkin-
son’s Awareness Month Event Challenge. Sign up to hold
your own fundraising event in April, whether it’s a bake
sale, a walk or a 5K run and we’ll help you do it! Visit
www.pdf.org/ pdf_champion.
•
Set up your own web page in honor of someone who lives
with PD. Visit www.pdf.org/pdf_champion.
•
Purchase the official PDF Parkinson’s Awareness Month T-
Shirt at www.pdf. org/shop.
(800) 457-6676
|
www.pdf.org/parkinson_awareness
|
info@pdf.org
Order your free toolkit today.
PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N
3
N E W S & R E V I E W
S P R I N G 2 011
seen several of her loved ones live
with the disease. But she was unsure
at that time as to what form her ca-
reer would take. After receiving a
bachelor’s degree in neuroscience, she
went on to complete a master’s degree
in Health Science at Johns Hopkins
University, where her focus was on
mental health, aging and neurodegen-
erative disease.
Her office-mate, a Parkinson’s
nurse specialist named Lisette
Bunting-Perry, Ph.D., suggested that
Dr. Vaughan apply for the PDF grant
to take advantage of an opening at the
University of Pennsylvania Parkin-
son’s Disease and Movement Disor-
ders Center, in Philadelphia, PA, on a
study looking at the long-term effects
of deep brain stimulation (DBS). (Dr.
Bunting-Perry, a leader in nursing edu-
cation, recently helped to develop an
online nursing course in Parkinson’s,
offered by PDF in collaboration with
other PD organizations.)
Dr. Vaughan was accepted and
spent the summer of 2002 examining
people living with Parkinson’s who
had undergone DBS, and interviewing
them about their post-surgery experi-
ence. During her time at Penn, she
worked with several leaders in the
Parkinson’s field, including her mentor
Andrew D. Siderowf, M.D., whose lat-
est study on cognitive testing for
Parkinson’s was published on the PDF
website just a few months ago.
And where did Dr. Vaughan end
Supported by PDF
on
on Research
Research
Christina Vaughan,
M.D., M.H.S.
Christina Vaughan, M.D.,
M.H.S., has come full circle as a
member of the Parkinson’s Disease
Foundation (PDF)
team. In her cur-
rent role as an ad-
visor to the PDF
HelpLine, Dr.
Vaughan — a
post-doctoral Fel-
low in movement
disorders at Rush
University Med-
ical Center in Chicago — helps to an-
swer unusual and difficult questions
about Parkinson’s disease (PD) and
keeps our staff updated on new devel-
opments in research and care.
But when Dr. Vaughan first came
to PDF nine years ago, it was as an ap-
plicant for one of our Summer Student
Fellowships. This program funds stu-
dents at several levels, from advanced
undergraduates to graduate and med-
ical students, to pursue Parkinson’s-re-
lated summer research projects under
the guidance of leaders in the field.
Dr. Vaughan already had a per-
sonal interest in Parkinson’s, having
up? She maintained the focus on men-
tal health that she began while at Hop-
kins, but is now combining this
expertise with her knowledge of PD.
Following the completion of her med-
ical degree and a residency in neurology
at the University of Pittsburgh, she
moved to Rush (which is one of PDF’s
research centers), where she is training
to be a Parkinson’s specialist with a spe-
cial interest in the mental health of peo-
ple with Parkinson’s.
As PDF Scientific Director Stanley
Fahn, M.D., noted last year, “We need
to be sure that the best talent is at-
tracted to the challenge of solving
Parkinson’s and helping those who live
with it.” With doctors like Dr. Vaughan
on board, we are hopeful for the future.
Dr. Vaughan still remembers her
PDF summer fellowship. She says it,
“opened up opportunities to work with
some of the best Parkinson’s researchers
and to have a very meaningful clinical
experience with people living with
Parkinson’s.” She also noted that
“while my plan to pursue neurology
and movement disorders was first in-
spired by my family members with
Parkinson’s, this fellowship definitely
helped to strengthen that plan.”
Dr. Vaughan’s 2002 fellowship
was supported by PDF’s Summer
Student Fellowships program, which
in 2010 supported 15 individuals with
$45,000 in funding. PDF’s grant to
Rush University in 2010 totaled
over $300,000.
Dr. Christina Vaughan
C
REATE A
P
ARKINSON
’
S
L
EGACY
•
Become a member of The James Parkinson Legacy Society
•
Combine your charitable giving with your estate and financial planning goals
•
Benefit from a substantial tax deduction
•
Receive guaranteed income for the rest of your life
By opening a charitable gift annuity or including PDF as part of your
estate plan you will:
(800) 457-6676
|
www.pdf.org
|
info@pdf.org
4
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
By Janna Dutton, J.D.
For people with Parkinson’s dis-
ease (PD) and their families who are
thinking about the possible need for
long-term medical
care, it is important
to understand what
help may be avail-
able through Medi-
caid. As we have
mentioned in previ-
ous installments of
this four-part series
covering legal is-
sues and Parkinson’s, long-term care
includes not just the services of a skilled
nursing facility, but such resources as
assisted-living communities and the in-
home aides who can help you with per-
sonal needs such as dressing, shopping,
eating and cooking. The term can also
include community services.
Medicaid, which is funded jointly
by federal and state governments, is
separate from Medicare, the program
for older Americans. Medicaid helps
people with few financial resources to
pay for medical care and can pay for
long-term care services. Determining
eligibility for Medicaid, however, is
complex, and varies from state to state.
In general, to be eligible you will need
to show family income below a certain
level, but there are provisions to enable
you to keep certain assets without los-
ing eligibility.
In the last three issues in this se-
ries, we reported on the importance of
long-term care, and delegating deci-
sions for health care and financial mat-
ters. In this final article, we discuss the
basics of eligibility for long-term care
under Medicaid. If you think that you
may need help in paying for long-term
care in the future, it is best to begin in-
vestigating Medicaid now. By plan-
ning ahead, you also can help ensure
that your assets are protected.
General Eligibility
The federal government establishes
general guidelines for Medicaid. In
general, in all states, to be eligible for
Medicaid coverage of long-term care in
a nursing home, assisted living, or in-
home program, you must be:
•
over the age of 65, or disabled
•
able to show that you do not have
enough income to pay for your
needed care
•
able to show that you have not
made a non-allowable transfer of
assets during a certain period of
time before your application (see
details below)
One of the most important things
to understand about Medicaid is that
each state administers its own Medi-
caid program. Because of this, the
services that are covered by Medicaid
vary significantly from state to state —
as do the income limits that are used to
establish eligibility for the program.
In most states, as long as your ac-
countable monthly income — that is,
your net income after adjustment for
certain allowable deductions — is less
than the cost of your care, you will be
eligible for Medicaid. Be aware that
there are ways to protect certain as-
sets to ensure you can provide for
your needs and those of your family
without losing your eligibility.
Supporting Your Spouse
If you bring in most of the house-
hold income, and also need nursing
home care, the eligibility rules will usu-
ally allow you to give some portion of
your income to supporting your spouse
who is still living at home. A spouse
who lives at home is called, in legal
terms, a “community spouse” (here-
inafter described simply as “spouse”).
The rules will also allow you to
take a deduction for the funds you
have set aside for your spouse if he or
she qualifies for it.
Allowable Assets
Some types of property are consid-
ered exempt from consideration for
Medicaid eligibility. These include:
•
$2,000 in a bank account, for the
purchase of clothing and other items
•
Homestead property (this helps pro-
tect your home, but in some cases
the equity protected is limited)
•
Personal effects and household goods
•
Automobile worth $4,500 or less (if
needed for medical transportation,
modified, or for employment, the
allowance is higher)
•
Burial plot, tangible burial items and
exempt prepaid burial arrangements
•
An asset allowance for your spouse
(calculating the amount allowed is
complicated and varies by state)
Transferring Assets
Medicaid programs have regula-
tions about how you can transfer funds
to others without putting your eligibil-
ity at risk, and recent legislation has
made these regulations more stringent.
For example, under the new law, the
“look-back” for Medicaid eligibility is
60 months. This means that if today
you are applying for Medicaid to cover
long-term care, you must report on
what you have done with your assets
during the last five years.
This provision is designed to make
sure that people do not give away as-
sets to make themselves eligible for
Medicaid. If this review shows that
you have made what is called a “non-
allowable transfer” of funds or assets,
you might be denied eligibility for
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