th June 2015 Newsletter - Friends of Parkinson`s

Volume 2, Issue 7
June 2015
Friends of Parkinson
THE PARKINSON POST
Special points of
interest:
New dopamine pump is “huge
step forward” for advanced
Parkinson’s. On page 2
Parkinson’s Disease patient
and caregivers symposium On
page 4.
Inside this issue:
New dopamine pump
is “huge step forward” for
advanced Parkinson’s
2
Deep Brain Stimulation for
Parkinson's Disease: Is it
Right for Me?
3
2015 Friends Campaign
3
Save the Date
4
Support Groups
5
WHY A TULIP?
6
Show Stopper at the Baha-
7
Greetings From the Publisher
7
New Assistant State Director
Jamillah Ali-Rahman, Executive
Director of Friends of Parkinson‟s,
has been named an Assistant State
Director of the Parkinson‟s Action
Network (PAN) for Nevada, a national nonprofit in Washington, DC
that advocates for better treatments
and a cure for Parkinson‟s disease.
Ms Ali-Rahman joins more than
100 other leaders and thousands of
volunteer grassroots advocates in
PAN‟s efforts to educate elected
officials and the public about the
importance of public policy and advocacy in achieving better quality
of life and eventually a cure for
Parkinson‟s. Parkinson‟s disease is
a chronic, progressive neurological
illness that affects as many as 1.5
million Americans. No treatment or
therapy current exists to stop or
slow the progression of Parkinson‟s
and it is currently the 14th leading
death in the United States. We congratulate Ms Ali-Rahman for her
commitment to the Parkinson‟s
community in Southern Nevada.
ABOUT PARKINSON‟S ACTION
NETWORK
The Parkinson‟s Action Network
(PAN) is the unified voice of the Parkinson‟s community advocating for better treatments and a cure. In partnership
with other Parkinson‟s organizations
(Continued on page 6)
THE PARKINSON POST
From the Pharm
New dopamine pump is “huge step forward” for
advanced Parkinson’s
Author: Parkinson's Life editors Published: 9 April 2015
eases or conditions affecting
fewer than 200,000 patients
in the US.
According to AbbVie, the
new treatment is the first and
only treatment providing 16
continuous hours of carbidopa and levodopa for motor fluctuations in advanced
Parkinson‟s. In a clinical trial, patients treated with DUOPA reportedly experienced
significantly greater reduction in „off time‟ than patients treated with oral carbidopa-levodopa immediate
release tablets.
C. Warren Olanow MD, of
the Department of Neurology
Campaigners in the US have welcomed the approval of a new dopamine
and Department of Neuroscience, Mount Sinai School of
pump as “a huge step forward” for treatment of people with advanced
Medicine, and lead investigator of the DUOPA trial, said:
“There is an unmet need for
treatment options for patients
Responding to news that the US
this
advance
being
made
available
with advanced Parkinson‟s
Food and Drug Administration had
to
patients
all
over
the
United
disease. As the disease adapproved DUOPA – a portable inStates.”
vances, it can be difficult to
fusion pump that delivers carcontrol motor features.
bidopa and levodopa directly into
the small intestine – NPF national
NPF is collaborating with AbbVie
medical director Dr Michael S.
in the development and delivery “In clinical trials, DUOPA
Okun said: “The approval of the
of comprehensive training prowas shown to significantly
dopamine pump for the treatment
grams for key stakeholders inreduce the amount of „off‟
of Parkinson‟s disease is a huge
volved in managing treatment
time people with advanced
step forward for treatment of Parkwith DUOPA.
Parkinson‟s disease experiinson‟s disease patients suffering
enced.”
from motor fluctuations and other
disabling symptoms.
The pump was approved by the
FDA as an orphan drug, a designation granted to products intend“We are very enthusiastic about
ed for the treatment of rare disPage 2
Volume 2, Issue 7
Deep Brain Stimulation for Parkinson's Disease: Is it Right
for Me?
Saturday, May 30, 2015
Sunrise Hospital Auditorium
Located the First Floor
3186 S. Maryland Pkwy
Las Vegas, NV 89109
10:30 - 11:00am: Check-In
11:00 - 1:00pm: DBS Info Session and Q&A. A light lunch will be served.
This is a free event, but registration is required as space is limited. To register, please call Damon (702) 3544100 or Louie (702) 336-2829.
Learn more about Deep Brain Stimulation (DBS) from a local neurologist and neurosurgeon. They will discuss
how DBS may help the symptoms of Parkinson's disease, who is a good candidate, details on the surgical procedure and follow up treatment. You will also hear a personal experience from someone who has had DBS therapy.
Medtronic is hosting the session and encourages care partners and family members to attend.
2015 Friends Campaign
In order for Friends of
Parkinson‟s to continue to
provide the services and
care to the Parkinson‟s
community, we need you to
help us. We have an innovative campaign that is being launched June 1. It‟s
our Friends Campaign. We
are asking all the “friends”
to support us by giving
$20.15 for our basic membership so we can continue
the Parkinson Post Newsletter. Our cost for printing
and mailing is $4.96 each
mailing. We mail four
times per year, bringing the
Page 3
cost to almost $20. We
want to make sure those
who don‟t use the computer or have access to
the computer will be
able to stay in touch
with the community.
We have other memberships as well; Active
Membership, $100 per
year; Associate Membership $150 per year
and the Charter Membership $250 per year.
Come by the office at
2400 North Tenaya
Way, Monday through
Friday 10am to 3pm for
more information about
the memberships, what
we‟re doing and what‟s
next.
Looking forward to the
Friend‟s Campaign
kicking off June 1!!!!!
THE PARKINSON POST
Page 4
Volume 2, Issue 7
Support Groups
Young Onset PD Support
Group of Southern Nevada
join our meetup group:
http://www.meetup.com/
Young-Onset-PDSupport-Group-ofSouthern-Nevada/
Caregivers Support
People with Parkinson’s
2nd Friday 10am
May 8, June 12
1st Saturday 9am
May 2
Mountain View Hospital
Mountain View Hospital
3150 N. Tenaya Way
Ste. 114
3rd Tuesday
May 19. June 18
Vida Training Center
1785 East Sahara Avenue Suite 430
Las Vegas 89104
3100 North Tenaya Way, First Floor
4th Tuesday 1:30
May 28
H2U Mountain View Office
3150 N. Tenaya Way
Ste. 114
Parkinson Patients
2nd Thursday 9 am
Mountain View Hospital
3100 North Tenaya
Way, First Floor
3rd Saturday
Life Care Center
6151 Vegas Drive
Las Vegas 89107
Dance for Parkinsons
exercise class
Las Ventanas Summerlin,
10401 W.Charleston Blvd between Hualapai & Town
Center Drive
Wednesdays 12:30-1:30 in Fitness Center, check in at
lobby reception desk
Veteran Support
Veteran Involve Parkinson (VIP)
First Tues day 1:00 pm May 5, June 2
Location TBD
Clear Breeze- Movement Therapies Introduces: Tai Chi
for Balance
Instructor: Melanie Huntley, Physical Therapist Assistant, for information: 702 278-1533 cell
Time: Mondays & Wednesdays, 11:00-12:00 Noon
Classes are sponsored by Las Ventanas Summerlin, so
are free to participants
Place: West Flamingo Active Adult Center
6255 W Flamingo Road
Las Vegas, NV 89103
(702) 455-7742
Taught by Tamalyn Taylor, MS.
(702) 528-6214
[email protected]
Page 5
THE PARKINSON POST
WHY A TULIP?
APRIL 16, 2015 SHERRI WOODBRIDGE
The tulip is described in detail as
the exterior being a glowing cardinal red, small feathered white
edge, the outer base whitish; the
inside, a currant-red to turkeyred, broad feathered white edge,
anthers pale yellow”.
Developed by Dutch horticulturist and Parkinson‟s disease patient J.W.S. Van der Wereld, the
new tulip was named after Dr.
James Parkinson, the doctor who
discovered Parkinson‟s disease. Not only did the tulip
receive the Award
of Merit that year from
the Royal Horticultural Society in England, but it also
was the recipient of the Trial
Garden Award from the
Royal General Bulb Growers
of Holland.
The James Parkinson Tulip
If you were to see a yellow ribbon
logo, you‟d think of supporting
our troops. Likewise, a pink ribbon being in support/advocating
for breast cancer awareness. But
a tulip?
Ah, the tulip. Red, at that. Unlike
the red rose, the red tulip doesn‟t
symbolize love, but is a symbol
adopted by the Parkinson‟s community worldwide to bring awareness to Parkinson‟s disease.
On April 11, 2005, the red tulip
with a fringe of white was
launched as the official symbol of
PD at the 9th World Parkinson‟s
disease Day Conference in Luxembourg (even though the red tulip had been associated with Parkinson‟s awareness since the early
1980‟s).
Page 6
and our powerful grassroots
network, we educate the public and government leaders on
better policies for research and
an improved quality of life for
people living with Parkinson‟s.
PAN has a unique structure as
the one organization in Washington, DC advocating on behalf of
the entire Parkinson‟s community. In addition to our network of
grassroots volunteers from
around the country, PAN represents The Michael J. Fox Foundation for Parkinson‟s Research,
the Parkinson‟s disease Foundation, The Parkinson Alliance, the
National Parkinson Foundation,
and the Davis Phinney Foundation. Very few other disease
communities have this distinct
and effective structure.
PAN‟s work spans a variety of
issues from Medicare therapy to
research funding to access to telehealth.
PAN is a nonprofit 501(c) (3) organization. Contributions to PAN
are tax-deductible to the extent allowed by law. Tax ID: #943172675.
PAN‟s History
PAN was founded in 1991 by Joan
Samuelson who, when diagnosed
with Parkinson‟s in 1987, realized
the disease was not receiving
enough funding or attention from
the Federal government. Joan left
the practice of law and put her hard
work and creativity into building
PAN so that there would be an organization to educate those with
Friends of Parkinson
The Parkinson Post
Editor Jon Carl Olson
Greetings From the Publisher
Friends of Parkinson
2400 N Tenaya Way
Suite #102
Las Vegas, NV 89128
Thank You for Your Support
We had our first major event as a new non profit during Parkinson‟s
Awareness Month. “The Funny Bunny Race for Parkinson‟s” was a tremendous success!!!
We could not have done it without you. Special Thanks and appreciation
goes to the following organizations and individuals:
Phone: 702-381-4141
Fax: 702-522-1863
E-mail: [email protected]
We’re on the web
Www.friendsofparkinsons.org
First Person Care Clinics
PDT Group, Inc.
US World Meds
Stavros Anthony
Whole Foods, Inc.
Lundbeck
The Get Active Foundation
Courage Unlimited
NV SMP – Nevada Senior Medical Patrol
S.H.I.P. – State Health Insurance Assistance Program
CareMore
Snazzy Booths
Petting Zoo 2U
DopaMind
Massage by Kandis
Smith‟s Food and Drugs
Ossie Finks – Photographer for Friends of Parkinson‟s
Show Stopper at the Bahama Breeze Restaurant
Friends of Parkinson‟s held its
annual Meet and Greet Thursday, April 23 at Bahama Breeze
Restaurant. Dr. Eric Farbman,
Assistant Professor of Medicine,
University of Nevada School of
Medicine, presented a treatment
option provided by US World
Meds. Dr. Farbman is one of
two movement disorder specialists here in Southern Nevada
that deals with the neurological
dysfunctions various diseases.
The attendees had many questions about the newest treatments and modalities for Parkinson‟s disease.
Jamillah Ali-Rahman, Founder
and Executive Director, introduced
the Board and the community supports. The Vision of FOP is to be a
part of a united Parkinson‟s community that works in tandem to produce
viable educational, recreational and
outreach programs.
The event was such a success with
more attending than expected. The
restaurant opened a
new area to accommodate the
guests.