introducing moving Day: people Who move Change the World

South Palm Beach County Chapter
Spring 2012
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Walk for Parkinson’s
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Saturday, October 21, 2012
FAU Stadium, Boca Raton
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www.npfmovingday.org
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Introducing
Moving Day: People Who Move Change the World
It’s a walk, it’s a community event, it’s a celebration of movement.
It’s Moving Day, the new Chapter event for the National Parkinson
Foundation. This signature event takes a traditional walk and
transforms it into a celebration of movement.
Studies have shown that movement – yoga, Tai Chi, dance, Pilates,
or even walking – is beneficial and proven to help manage the
symptoms of the disease, improving flexibility and mobility. Plus,
researchers now believe that vigorous exercise, such as biking or
running, may slow down or delay progression. This event is designed
to create greater awareness – not just of the importance of movement,
but of Parkinson’s disease itself, a movement disorder.
Moving Day will feature a ‘movement pavilion’ with demonstrations
of a variety of stretches, exercises and more! This family-friendly
event is meant for all ages and abilities, Funds raised will be used to
provide national and local services, including our extensive network
of support groups for patients and caregivers, educational materials,
informational meetings, and weekly therapeutic exercise programs,
as well as to support research to beat Parkinson’s!
We’re pleased to announce that former Gov. Jeb Bush has agreed to
be Honorary Chair for Moving Day events in Florida. The former
governor’s endorsement and support of Moving Day will help our
Chapter significantly raise our profile in the community and attract
more corporate and individual support. Moving Day kicks off in
Tallahassee on May 19, and then moves to Miami on October 7, and
Boca Raton on October 21.
We are further pleased to announce that Dunkin’ Donuts has agreed
to be one of the sponsors’ of Moving Day in both Miami and Boca
Raton. We are forming our Planning Committee and are looking for
your assistance. Please contact Stuart Perlin at (561) 306-2090 or
stuartperlin@email.com if you can help.
Look for more Moving Day details in the Fall issue of LifeLines!
President’s Report
South Palm Beach County Chapter
P.O. Box 880145
Boca Raton, FL 33488-0145
(561) 482-3106
Board of Directors
Irving Layton
President
Jack Mueller
Executive Vice President
Leo Geller
Vice President
Charlotte Okonow
Vice President
Milka Santos
Vice President
Stuart Perlin
Vice President
Kay Layton
Secretary
Florence Schneider
Treasurer
Elaine Feldman
Contributions
Bonnie Austin
Joy Binkovitz
Annette Fentin
Judy Heyman
Beth Ann Krug
Marilyn Perlin
Phyllis Riesner
Rabbi Merle Singer
Ray Schwartz
Martin Sloane
Board Members
Medical Advisory Board
Dr. Stuart Isaacson, Medical Director
Dr. Frederick Boltz
Dr. Bruce Barton
page 2
By Irving Layton
The transition into the year 2012 has been vigorous and stimulating
for your Chapter. On January 18, we held a fundraiser at the fabulous
private Milhous Museum. The display of antique cars and the
multitude of various musical instruments and other memorabilia
was beyond belief. The attendees were absolutely thrillled to be able to view such a
fine exhibition, particularly because this charity affair was the last one being held at the
Milhous Museum, which has since closed and the items in it sold at auction. It is a great
loss for our community.
On January 29, we held our Annual Sanctioned Bridge Tournament and Luncheon, at St.
Andrews Country Club, headlined once again by Zeke and Sharon Jabbour. The group of
professional bridge icons who attended helped to make this a very enjoyable day. We are
most appreciative of the fine effort of Chairlady Marilyn Perlin, who brought a special
aura to the entire event. The Alvin Perlin Memorial Bridge Tournament is an established
component of the Chapter’s fundraising program.
The third fundraiser that opened the new year was our wonderful Annual Card Party
and Luncheon & Boutique, held Februrary 13, at St. Andrews Country Club. This event
overshadowed the eight previous annual affairs. We are most grateful for the tremendous
job done by Co-Chairladies Phyllis Reisner, Judy Heyman, and Marsha Fox, ably assisted
by Audrey Wood and the committee.
Our Support Group/Caregivers’ monthly meetings have been attended by more and more
people interested in Parkinson’s Disease. We have been fortunate to obtain speakers that
are some of the leading neurologists that specialize in the treatment of PD. These sessions
are held at the Volen Center on the third Monday of the month, at 9:30 a.m. Save-theDate reminders are sent monthly.
Other programs supported by the Chapter are detailed throughout this issue of LifeLines,
including Surf and Turf physical therapy, new music and dance therapy, Parkinson
Education Network symposiums, our newly established web page, and our Annual
Richard Okonow Memorial Golf Tournament.
Please take special notice of our Moving Day Walk, which will be held on October 21, at
the new stadium on the campus of Florida Atlantic University in Boca Raton. Be sure to
plan to participate!
One more important item: Please do not forget to pay your dues for 2012, and any
contribution will be gratefully accepted. Only through your generosity can we continue to
help those in our community with Parkinson’s disease and their caregivers. We know that
you consider the work we do to be very important, and we rely on you to help us maintain
our ongoing program. Thank you for your support.
April is Parkinson’s Awareness Month
Learn more about PD in our community
at our new website:
www.npfsouthpalmbeach.org
LifeLines
Caregiver Support Services
The third Monday of each month
Monday, March 19, 2012
Henry P. Moore, MD
Asst. Professor University of Miami Neurology
Topic: Benefits of Exercise in P.D.
Monday, April 16, 2012
Carlos Singer, MD
Head of Parkinson’s & Movement Disorders Center
At Miller School of Medicine, University of Miami
Topic: Exercise for the Mind and Parkinson’s
Monday, May 21, 2012
Henry P. Moore, MD
Aware In Care New Campaign
Addresses Critical Need
With a singular focus on improving the quality of care for this
generation of Parkinson’s patients, the National Parkinson
Foundation (NPF) has launched a campaign, Aware in Care, which
aims to help people with PD get the best care possible during a
hospital stay.
To protect, prepare and empower PD patients before, during, and
after a hospital visit, NPF has developed a free Aware in Care kit
with key information for patients to share with hospital staff during a
planned or emergency hospital stay. The kit is available through NPF
Chapters and support groups across the country.
The Aware in Care kits are filled with useful information and tools for
PD patients and their caregivers. The kit includes an action plan to
prepare for a hospital visit; an ID bracelet for the PD patient to wear
at all times in case they are in an emergency situation and cannot
communicate; a form for listing dosages and frequencies for all PD and
other in medications; a PD fact sheet; and reminder slips for hospital
staff, listing vital information about caring for a person with PD.
People with Parkinson’s disease are hospitalized more often than
patients with other conditions and it is critical that they receive their
medication on time, every time.
A recent survey by NPF revealed that 70 percent of hospital staff
do not understand the drugs that worsen motor symptoms of PD, or
that many common medications for pain, nausea, depression, and
psychosis are unsafe for people with the disease. As more and more
patients use the tools included in the Aware In Care kit, we hope to
bring about a significant change!
Spring 2012
Asst. Professor University of Miami Neurology
Topic: Updates on P.D. and Exercise
9:30-10:30 a.m.: Speaker for entire group
10:30-11:30 a.m.: Caregivers’ Support Group
Physical Exercise Class for people with PD
by Noah Fields of the Boca YMCA
Continental Breakfast courtesy of Hospital Without
Walls Home Health Agency offering a Parkinson specific
rehabilitation therapy program: 1-800-279-2064
Sponsored by the South Palm Beach County Chapter
of the National Parkinson Foundation
If you need a ride to get to the Mae Volen Senior Center,
transportation is FREE to our Support and Caregiver Groups.
To make arrangements, 1) You must register; 2) Make your
appointment one day in advance, before 3:00 p.m.; and
3) Be ready on time. A one-hour window is given.
Call for your appointment: Boca & Delray: (561) 395-8920
Boynton: (561) 736-3820; Transportation is Ext. 1-228 or 1-229
Tell Everyone You Know…
If you know someone with Parkinson’s disease,
please encourage him or her to attend our monthly
Caregiver Support meetings. Both patients and
their caregivers are welcome at these sessions that
include important informational presentations by
medical professionals, plus a Caregivers’ Support
session, and a physical exercise class for those
with PD. The Chapter does all it can to promote
the program, but we need your help to let all PD
patients in the community know about this service.
page 3
Our Surf and
Turf Program
Serving more Members each month!
At Four Locations: Boca Raton, Boynton Beach,
West Palm Beach & Port St. Lucie
Please encourage anyone you know with PD to try our Surf and Turf Program. Everyone who participates comes out of each class
feeling better and more optimistic. The class members get to know and care about one another and they look forward to their time
together. We need your help to spread the word to PD patients in the community. Remember, it’s free to Chapter Members, and
membership is only $25 annually. For more information, please call Jack Mueller at (561) 482-3106.
Peter Blum Family
YMCA of Boca Raton
6631 Palmetto Circle S.
Boca Raton, FL 33433
(800) 798.4531
Schedule: Tuesday and
Thursday
11:30 a.m. to 1:15 p.m.
**Friday’s class at the
Boca Y features YOGA!
11:00 a.m. to 1:00 p.m.
YMCA of Boynton Beach
9600 S Military Trail
Boynton Beach, FL 33436
(561) 738-9622
Schedule: Monday,
Wednesday, and Friday
10:00 a.m. to 12:00 p.m.
Features Basketball
Edwin W. Brown Family
YMCA of the Palm Beaches
2085 South Congress Avenue
West Palm Beach, FL 33406
(561) 968-9622
Schedule: Tuesday, and
Thursday
10:30 a.m. to 11:15 p.m.
land exercises (TURF) and
11:30 a.m. to 12:30 p.m.
water exercises (SURF)
DeVos Blum Family
Abbington at Traditions
10685 SW Stoneycreek Way
Port St. Lucie, FL 34987
Call Chris at (561) 762-3879
Schedule: Thursday
11:00 a.m. to 12:30 p.m.
Features Exercise with the
Oldies
Features Yoga on Fridays
Features: Tai Chi in the pool
A Short History of Surf and Turf
If you live in Palm Beach County and you have PD, you are in the
right place. Why? Because we have three YMCAs to help you manage
the effects of PD, thanks to the South Palm Beach County Chapter of
National Parkinson Foundation and its President, Irving Layton.
It all started around August 2007, at the YMCA in Boca Raton. Our
exercise group, called Surf and Turf, started with only about seven people
and has now grown to include over 30 people who regularly attend
class and sometimes, we have as many as 50. Our classes are Tuesday,
Thursday, and Friday. We start our class with dry or land-based exercise
for 45 minutes, and then change into swimsuits and for 45 minutes of
water-based exercises. Our Friday class includes Yoga-style dry exercise
before we go into the pool.
When word got out about how great the program was, we realized that
we needed to expand, so we added the Boynton Beach YMCA in late
2008. In early 2010, we expanded to the YMCA of the Palm Beaches. We
now have over 200 Members on our roles.
You get access to all these session for a small Membership fee of $25.00
per calender year. Being a Member also means you get our newsletter,
LifeLines, three times each year, plus Save-the-Date cards to inform you
of upcoming Chapter activities. If you like what you have read so far,
contact Jack Mueller at (561) 482-3106, to hear lots more about the value
of being a Chapter Member.
page 4
Study To See If Walking and/
or Memory Training May Prevent
Memory Problems In People With
Parkinson’s Disease
Researchers from the University of Maryland School of Medicine
and the Baltimore VA Medical Center have launched a study of
exercise and computerized memory training to see if those activities
may help people with Parkinson’s disease prevent memory changes.
The type of memory that will be examined is known as “executive
function;” it allows people to take in information and use it in a new
way. Many Parkinson’s patients develop problems with executive
function, which can prevent them from working and may eventually
require a caregiver to take over more of the complex cognitive tasks
of daily living.
“Studies of normal aging show that memory and executive function
can be improved with exercise, such as walking several days a
week,” explains Karen Anderson, M.D., principal investigator
and an assistant professor of neurology and psychiatry at the
University of Maryland School of Medicine. Dr. Anderson is
also a neuropsychiatrist at the Maryland Parkinson’s Disease and
Movement Disorders Center at the University of Maryland Medical
Center and a clinician in mental health at the Baltimore VA Medical
Center.
LifeLines
Other South Palm Beach County Chapter Programs
In an effort to fulfill our mission, we continue to enhance and extend the programs offered by the Chapter.
Listed below are several upcoming events. We encourage you to participate in all that you think
will be beneficial to you. For more information, please call Milka Santos at (561) 379-4593.
2012 Parkinson
Educational Conferences
March 29
April 20
October 26
Treasure Coast
Broward
Dade
More Details to follow!
Each Conference will offer:
• Speakers of interest to the PD community
• CE for professionals
• Free admission for people living with PD
and caregivers
• Breakfast, lunch, and a snack
• Community Resource Center
The Parkinson Disease and
Movement Disorder Center of
Boca Raton
11:00 a.m. every Monday. Space is limited.
951 NW 13th Street Building 5-E
Boca Raton, Florida 33486
Contact: Front Desk – You must RSVP!
(561) 392-1818 press #7
Parkinson Day Program
1:00-5:00 p.m. Mondays and Thursdays
each week. Music Therapy, Physical
exercise, Cognitive & Creative activities
Fee: $55.00 per day
Green Memory and Wellness Center (FAU)
777 Glades Road Building AZ-79
Boca Raton, Florida 33431
(561) 297-0503
Parkinson Care Partner Support
10:00 a.m. Second Monday of the month.
DeVos Blum Family YMCA of BB
9600 South Military Trail
Boynton Beach, Florida 33436
Phone: (561) 738-9622
Young PD Group
Under 60 years of age ONLY
5:00 p.m. Every Monday and Thursday.
Avenue Therapy & Wellness Inc
Pipers Glen Plaza – 12040 Jog Road, Suite 8
Boynton Beach, Florida 33437
Phone: 561-733-5083
Web: www.avenuetherapy.com
Spring 2012
Abbey Delray South
12:30-1:30 p.m. Hospitality Room
Call for schedule (561) 454-5242
1717 Homewood Boulevard
Delray Beach, Florida 33445
Contact: Ron Arflin, D. Min.
Phone: (561) 454-5242
South County Civic Center
2:00-4:00 p.m.
First Wednesday of the month.
Support Group, Exercises,
Caregiver Group
16700 Jog Road
Delray Beach, Florida
Contact APDA (800) 825-2732
Call for dates
V. A. Hospital (Veterans only)
11:00 a.m. Third Thursday of every
month.
7305 North Military Trail
West Palm Beach, Florida 33410
Contact: 561-422-6237
Loreen Blumenthal, M.S.P.A.,CC-SLP
Royal Palm Beach Recreation
Center
10:30 a.m. Every Monday & Wednesday.
First Wednesday of the month: Breakfast
& Learn (lecture & Breakfast)
Fourth Monday of the month: Care
Partner Support Group (lead by LCSW
from MorseLife) & Chair Exercise
Weekly Exercise Class features Dance
Weekly Program features PD support
from members
100 Sweet Bay Lane
Royal Palm Beach, FL 33417
Contact: Mr. & Mrs. Webber
Phone: (561) 798-7798
New Day Parkinson Day Program
Respite Care available Monday-Friday.
301 Ebbtide Drive
North Palm Beach, Florida 33408
Contact: Barbara
Phone: (561) 844-0012
Christ Fellowship Life Center
2:00-3:30 p.m. Second Wednesday of the
month. Support Group
Lunch & Learn
5343 Northlake Boulevard, Room 206
Contact: Alicia Roman, (561) 626-5880
12:30 p.m. Third Wednesday of month.
Physician Lecture & Lunch
Jupiter Activities Bldg
2085 South Congress Avenue
Palm Springs, Florida 33406-7695
Phone: (561) 968-9622
1:00 p.m. First Friday of month: group
goes out to lunch.
Third Friday of the month: Lunch &
Learn (PD Lecture)
Care Partner Support and
Parkinson B.S. Session
10:30-11:30 a.m.
C.P. Support Fourth Tuesday of the
month.
10:00-10:30 a.m. B.S. Session Weekly.
Group is led by LCSW from the
Just Checking Program at Morse Life
YMCA of Palm Beaches
2085 South Congress Avenue
Palm Springs, Florida 33406-7695
Phone: (561) 968-9622
Lighthouse Area
210 North Military Trail
Jupiter, Florida 33458
Contact: Muriel
Phone: (561) 744-0327
Movers & Shakers of the
Treasure Coast
1:00 p.m. Second Monday of every
month. Lecture & PD/CP Support group.
Grace Place Community Church
1550 S.E. Salerno Road
Stuart, Florida 34994
Phone: (772) 286-3268
page 5
Clinical volunteers needed in fight against Parkinson’s
By Michael J. Fox
Years ago, diseases like cancer and HIV / AIDS presented patients
with an imminent death sentence. While there's no doubt that receiving
a diagnosis of serious illness remains a life-changer, today many
patients with conditions like these can look forward to a much brighter
prognosis, thanks to new and better therapies and the researchers who
have dedicated their lives to developing them.
Yet no matter how many researchers join the effort to find treatments
that improve patients' lives, the endeavor cannot move forward without
the active involvement of another group of participants. Less celebrated
than the scientists, but no less critical to new treatments landing in
medicine cabinets, are the everyday people behind the scenes whose
extraordinary commitment makes research possible – the volunteers who
give of themselves, allowing clinical studies to happen in the first place.
And we need more of them.
I'm an advocate for Parkinson's disease research, in part because I have
been living with the disease for close to 20 years, but also because the
foundation I started in 2000 is convinced that we're closer than ever to
developing Parkinson's treatments that far exceed what's available to
patients today.
So far, we've invested more than $250 million in research with one
goal: speed breakthroughs that can stop the progression of the disease,
so that a newly diagnosed patient need never advance to full-blown
symptoms.
No such therapy exists, but we’re working to change that. And we
need your help.
Here in Boca Raton, a team led by Dr. Stuart H. Isaacson, medical
director, Parkinson’s Research and Education Foundation, has
joined forces with us on a clinical study called the Parkinson’s
Progression Markers Initiative, or PPMI.
PPMI seeks to identify a critically needed research tool called
a biomarker, which will allow scientists to measure biological
differences between people with Parkinson's and without, and track
the progression of the disease in patients' brains and bodies. These
are fundamental needs in the development of next-generation
treatments for Parkinson's or for any disease. Simply put, though
we've made real therapeutic advances already, finding a biomarker
would blow the roof off what we've been able to do so far.
You may not have a personal connection to Parkinson's, but rest
assured the need for biomarkers – and for collaborative efforts to
speed cures – touches us all.
Some of the most exciting science reported in the past year
emerged from the Alzheimer's Disease Neuroimaging Initiative,
a study similar to PPMI, which in a few short years has identified
extremely promising biomarker candidates for Alzheimer's. The
ADNI team has demonstrated that when communities work
together on collaborative, open-source research efforts, results
come much more quickly.
To paraphrase a familiar quote: Of those to whom much is
promised, much is expected. Every clinical study aims, in some
way, to fulfill the promise of scientific innovation – but none
of these studies can be successful without the participation of
committed volunteers.
There is no Department or Secretary of Cures. It's us.
New Approaches to Treat Symptoms
Swiss biotech Addex Pharmaceuticals launched a clinical trial
last spring, targeting the neurotransmitter glutamate. Similar to
dopamine, glutamate is responsible for transporting brain messages
and controlling body functions. The hope is that, by bypassing the
dopamine system altogether, it might be possible to provide the same
symptomatic benefit of levodopa without triggering adverse effects
such as dykinesias. Addex is studying how limiting the activity of
a particular glutamate receptor called mGluR5 could reduce these
dykinesias.
page 6
The study is based on work that dates back to 2005, by Angela
Cenci-Nilsson, MD, PhD, of Lund University in Sweden and Erwan
Bezard, PhD, of the University of Bordeaux, which validated this new
therapeutic target in pre-clinical models. Other major pharmaceutical
companies, including Novartis, have also moved mGluR5 therapies
into the clinic.
LifeLines
Reception and
Private Tour of the
Milhous Collection
Wednesday, January 18, 2012
What do I need to know about FDA
recalls on Stalevo, the patch, and
other Parkinson’s disease drugs?
Recently, the U.S. Food and Drug Administration (FDA) has been
making headlines over several drugs used to treat PD. Drug recalls,
reviews, and safety alerts are an important reality for people with PD.
Always talk to your doctor about the risk-benefit ratio of any drug
currently under FDA review, and also inquire about potential alternative
management strategies. Here’s what you need to know:
A FDA Drug Recall refers to the removal of an over-the-counter or
prescription drug from the market. For more information go to www.
fda.gov.
The following drugs have been recalled:
Cisapride (Propulsid): Used to help gastrointestinal emptying issues. It
was recalled for heart-related safety issues.
Tolcapone (Tasmar): Used to treat on-off fluctuations and to extend
the longevity of each Sinemet dose. It was recalled due to several cases
of fatal liver toxicity. However, it was reintroduced after the FDA
mandated a black box warning. Tolcapone now requires liver function
tests, but is considered to be safe.
Pergolide (Permax): Used to stimulate dopamine receptors (a
dopamine agonist). It was recalled because of an association with heart
valve damage.
Rotigotine (Neupro): A dopamine agonist transdermal patch that was
recalled due to a delivery problem. The FDA will allow it back on the
market after it is reformulated.
Levodopa-carbidopa-entacapone (Stalevo): The FDA recently
announced it was reviewing the drug for a potential increase in cardiac
risk. Stalevo remains on the market pending this FDA review.
Tips for Daily Living
The saying goes that ‘knowledge is power’ – and that phrase
has never been truer than for people with Parkinson’s disease.
Here’s how to stay on top of your medical treatment:
Build your own health files: Keep a copy of your medical
records, including diagnostic test results.
Take notes: Jot down questions that come up between
scheduled doctor’s appointments.
Keep a medication schedule: Download a weekly schedule
to write the times and doses of each medication you take.
Know your drugs: Read up on the Latest FDA alerts,
reviews, and recalls. Make it a habit to visit www.fda.gov.
Speak up: Discuss changing symptoms and medications with
your doctor. Post a question in NPF’s “Ask the Pharmacist”
online forum – it’s free!
Have you considered the challenges of paying
for care if you have a long-term care need?
These are questions many people in their 40s, 50s, and 60s probably
do not spend a lot of time thinking about, much less planning for. And
unless a friend or family member has required long-term care, it is a
subject many people know little about.
The government has made it clear that health care programs will not
expand to provide financing for long-term care. According to the US
Department of Health and Human Services, 70 percent of Americans
reaching age 65 will need long-term care at some point.
If you are employed and become ill or have an accident, your
accumulated sick leave may cover your living expenses – at least for
page 8
the short term – but what about the long term? You may not think you
are old enough to be concerned, because people often do not want to
talk about the prospects of needing long-term care. However, in the
blink of an eye, the need for day-to-day assistance could become a
major issue, and the likelihood of individuals needing term care often
increases in the Golden Years.
LifeLines
Reprogramming Brain Cells
Important First Step for New
Parkinson’s Therapy
ScienceDaily (December 13, 2011)
In efforts to find new treatments for Parkinson’s disease (PD),
researchers from the Perelman School of Medicine at the University
of Pennsylvania have directly reprogrammed astrocytes, the most
plentiful cell type in the central nervous system, into dopamineproducing neurons. PD is marked by the degeneration of
dopaminergic neurons in the midbrain. Dopamine is a brain chemical
important in behavior and cognition, voluntary movement, sleep,
mood, attention, and memory and learning.
“These cells are potentially useful in cell-replacement therapies
for Parkinson’s or in modeling the disease in the lab,” says senior
author John Gearhart, PhD, director of the Institute for Regenerative
Medicine (IRM) at Penn. “Our study is the first to demonstrate
conversion of astrocytes to midbrain dopaminergic neurons, opening
the door for novel reprogramming strategies to treat Parkinson’s
disease,” says first author Russell C. Addis, PhD, a senior research
investigator with IRM.
Parkinson’s affects different areas of the brain, but primarily attacks
the dopamine-producing section called the substantial nigra. Cells
in this region send dopamine to another region called the striatum,
where it is used to regulate movement. The chemical or genetic
triggers that kill dopamine neurons over time are at the heart of
understanding the progressive loss of these specialized cells.
Deep Brain Stimulation Surgery
Benefits Last a Decade or Longer
Researchers from Toronto, Canada, recently published a paper in
Archives of Neurology following up with Parkinson’s disease patients
who had undergone Deep Brain Stimulation (DBS) surgery ten years
earlier. The study found that motor improvement, on the whole, was
sustained ten years following the procedure, although overall benefit
was less than patients had experienced in the immediate aftermath of
the procedure.
Scientific Advisory Board member, DBS pioneer, and study author
Andres Lozano, MD, PhD, professor of neurosurgery and head of
applied and interventional research at Toronto Western Hospital,
spoke about the meaning of these results to people with PD,
especially those who are considering DBS as a treatment option.
We found that the motor symptoms associated with PD – tremor,
rigidity, and bradykinesia, or slowness of movement – were
improved after the procedure. Moreover, the benefit to these
symptoms was sustained up to ten years.
However, we found that in some aspects, in particular posture
and gait, the patients were worse. Non-motor symptoms, such as
cognitive impairment, fatigue, and digestion issues, unfortunately
also continued along their natural course without much influence
from the surgery.
As many as one million people in the US live with PD, according
to the Parkinson’s Disease Foundation. Symptoms include tremors,
slowness of movements, limb stiffness, and difficulties with gait and
balance.
Clinical Trial to Test a Potential Vaccine to Slow
Parkinson’s Disease Progression
Last summer, funding was awarded for a first-of-its-kind therapeutic
approach to Parkinson's disease: a vaccine targeting alpha-synuclein,
a protein implicated in Parkinson's disease. The vaccine aims to slow
or stop the progression of Parkinson's, something no current treatment
can do.
Vienna, Austria-based company AFFiRiS AG is conducting a clinical
study of the safety and efficacy of its vaccine candidate PD0l. The
hope is that this agent will simulate the production of antibodies that
bind to alpha-synuclein, clearing it from the brain and slowing disease
progression. Alpha-synuclein is important largely because there
Spring 2012
is compelling evidence that it may play a role in both genetic and
idiopathic cases of PD. It is also the major component in the Lewy
bodies that are found in the brains of PD patients.
The trial, led by AFFiRiS chief medical officer Achim Schneeberger,
MD, engages 24 subjects with mild Parkinson's disease over two
years at a single clinical site in Austria. "While it's important to bear
in mind that PD0l is still in the early stages of clinical testing," says
Jamie Eberling, PhD, "we are optimistic because this is the first study
to test a vaccine for Parkinson's disease. If successful, it could be a
game changer."
page 9
Researchers Identify Path to Treat
Parkinson’s Disease at Inception
Imagine if doctors could spot Parkinson’s disease at its inception and treat
the protein that triggers it before the disease can sicken the patient. A team of
researchers led by Basir Ahmad, a postdoctoral researcher at Michigan State
University, has demonstrated that slow-wriggling alpha-synuclein proteins are the
cause of aggregation, or clumping together, which is the first step of Parkinson’s.
The results are published in the Proceedings of the National Academy of Sciences.
Proteins, which are chain molecules composed of amino acids, do most of the
work in cells. While scientists understand how proteins are structured, they do not
yet know how they are built – a process known as folding. When errors happen in
folding, proteins clump together, form plaques such as those found in Parkinson’s
disease, Alzheimer’s, and Lou Gehrig’s disease, and cause cells to degenerate.
Lisa Lapidus, MSU associate professor of physics and astronomy and coauthor of the paper, has dedicated her lab to researching folding. Using lasers
to investigate the protein alpha-synuclein, the scientists correlated the speed at
which the protein rearranges with its tendency to clump. A slower speed places
the protein in a “dangerous regime,” a pace that allows it to develop sticky
patches, aggregate, and cause cellular damage, Lapidus said.
Historically, embryonic stem (ES) cells have shown
promise for treating Parkinson’s disease in a Petri
dish. But they have not yet been effective once
transplanted into a living organism. A new technique,
however, has revealed fresh promise in models
of PD, reflecting the potential for dopamine cells’
survival and function in the brain. The research was
led by Lorenz Studer, MD, director of the Sloan
Kettering Institute (SKI) for Stem Cell Biology.
“There are many, many steps that take place in aggregation, but we’ve identified
the first step,” she said. “Finding a method to fight the disease at its first stage,
rather than somewhere further down the road, can hopefully increase the success
rate in which the disease is treated.”
The identification of this critical first step already has the researchers pursuing
new ways to attack the disease. Lapidus is currently testing a number of naturally
occurring compounds, such as curcumin, ECGC, and resveratrol, which could
push the rearranging protein out of the danger zone.
“We are now looking for molecules that can alter the protein when it first begins
to ‘misfold’, which could eventually lead to the development of a drug that could
prevent aggregation before it happens,” she said.
SOUTH PALM BEACH COUNTY CHAPTER N.P.F.
I want to support the mission of the
National Parkinson Foundation by becoming a
MEMBER of the South Palm Beach County Chapter.
Name:
Address:
City:
State/Zip:
Phone:
Email:
page 10
New Technique Brings
Stem Cell Therapy Closer
to Reality
In 2001, Dr. Studer was began to investigate the
potential of ES cells to treat PD, and was part of the
team that first successfully induced human ES cells to
turn into dopamine neurons in research experiments.
While Dr. Studer’s results are promising, there is
still much work to be done before stem cells can be
considered a viable therapeutic option for PD.
q $25 per person, Annual Membership q $_________________ Additional Contribution (optional)
q $200 per person, Lifetime Membership
Enclosed is my check payable to the
SOUTH PALM BEACH COUNTY CHAPTER N.P.F.
Return to: P.O. Box 880145, Boca Raton, FL 33488-0145.
For more information, call (561) 482-2867.
STOP PARKINSON’S DISEASE BEFORE
IT STRIKES SOMEONE WE LOVE!
THANK YOU FOR CARING.
LifeLines
Tribute Program
The South Palm Beach County Chapter gratefully acknowledges the following gifts received between January and February 2012.
These contributions will help support research designed to find more effective treatments and a cure for Parkinson’s disease,
and will provide programs and services to improve the lives of Parkinson’s patients and their families in our community.
Special Donations
Maury & Barbara Young
Robert Elliott
Jeanette Nadle in memory of
her husband, Sam
Werner & Judy Brodman in memory of
sister Laura Sonnenberg
Edwin & Carolyne Levy in honor of
Irving Layton
Harold Schwartz in memory of
his wife, Faith
Donations
Thomas Weeman
The Steele Family
Sondra Dimeff
Geraghty Family
Lucille Weiman
Lynn Weeman
Cristal Rohats
The Razoo Foundation
George T. Boyle
Gerald Gitner
Gerald Greenberg
Ed Youngling
Dai & Suzanne Keller
Thomas & Luann Souva
Eric Nolve & Karina Vechele
Jim & Sina Lopiccolo
Rev, Mr. Devon Mike Hammond
Carl Dressel Family
Michael & Catherine Lanzsiedor
Gavin & Frayda Aaron
Mr. & Mrs. Leroy Lowenfeld
Paul & Claire Farmer
Ernest & Erna Bloom
Phyllis & Sidney Magerer
Pearl & Bernie Gold
John Geminari
Irvin & Theresa Dariveff
Harold & Erica Bishins
Matthew & Rosemary Martoma
Foundation
Zina & Howard Issacs
Glenda Tabor
Linda Tartus
Gloria Aranke
Francine Kinzbaunner
Frank Arams
Anna Gordon
Harriet & Harold Ross
Bernard & Beverly Goldberg
Oscar Ziemba
Barbara & Philip Brouse
Philip Schenker
David & Ruth Wachs
John & Gail Tzsak
Bonnie & Jeff Austin
Steve & Barbara Frankel
Susan Kaskel
Congratulations
Memoriams
In memory of Ira Phillips
Martin Sloane
In memory of Vincent Pulve
Kay Layton
In memory of Lori Sofro’s Mother
Joy & Gene Binkowitz
In memory of Shirley Schwartz
Muriel & Ray Kanow
In memory of Benny Okun
Joy & Gene Binkowitz
In memory of Oscar Warner
Linda & Donald Schlenger
Judy Heyman & Phil Chamberlain
In memory of Elvin Gidiveas
Rose Michael Revzon
In memory of Stephan Koepfer
Arlene Teichberg
In memory of Gerald Greenberg
Rhoda & Jack Potash
Kim Hollander
In memory of Thelma Zalt
Linda Gardner
In memory of Werner Brodman
Kay & Irv Layton
Elaine & Arnold Feldman
Sydell & Arnie Aaron
Volunteers Needed
To help The South Palm Beach County Chapter of the National
Parkinson Foundation fulfill its mission: to give aid, support, and
comfort to those persons in our community who are afflicted with
Parkinson’s disease, and their Caregivers, and to fund research TO
FIND A CURE. • Help with administration • Help with preevent planning • Help with event activities
You can devote as much or as little time as you can spare, knowing
that you are making a valuable contribution to our community. If
you can help in any way, please call Irving Layton at 561-482-2867.
Spring 2012
In memory of Marvin Middleman
Muriel & Ray Kanow
In memory of Judy Lorber
Audrev Leader
Sandy Feinstein
Phyllis & Noah Fields
In memory of Sharon & Zeki Jabbour’s
Daughter, Jill Cleary
Marilyn Perlin
Kay & Irv Layton
Dion, Jayne, Jacob & Savanah Diross
Kristen Pascoe
In memory of Clarine Cox
Conrad Cox
To Bruce Kirschenbaum on his 90th Birthday
Ray Schwartz
To Maria Ramon
Joseph S. Auteri
To Irving Rapoport
Dr. Haskell Rapoport
To Jack Mueller
Stuart Alterman
To Irving Layton
Edwin & Carolyne Levy
To Philip LoGrasso
Barbara Suflas
To Elaine Ross on her 70th birthday
To Allen Garf
Enid & Allen Garf
To Alvin Gelb on his 90th Birthday
In honor of Bernard Goldstein’s 95th Birthday
Dorothy Shapiro
Ray Schwartz
Shirlee & Nat Marks
Natalie Weiser
Pearl Weinberg
Kay & Irv Layton
Honor someone for a special achievement or occasion,
encourage a speedy recovery from illness, or pay homage
to a person in memory, and give that tribute meaning by
making a donation in his or her name, to the
South Palm Beach County Chapter
National Parkinson Foundation
P. O. Box 880145
Boca Raton, FL 33488-0145
Or call Elaine Feldman at (561) 487-0391.
We will be happy to send a card letting that person know
that you made a contribution in their honor to HELP FIND A
CURE. What better way to say how much they mean to you!
page 11
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Celebrate victory – don’t dwell on defeat, and count your blessings every day!
Card Party, Gala
Luncheon & Boutique
Monday February 13, 2012