MONTREAL, Oct. 3, 2013 /PRNewswire/ -- UCB today
announced two poster presentations at the 2013 World Parkinson
Congress (WPC) highlighting key Parkinson's disease (PD) patient
support programs aimed at providing educational support through
social media and other tools. The WPC is being held at the Palais
des Congres in Montreal, Canada,
October 1-4, 2013.
Abstract title: The social movement: building the More
Than Motion™ Facebook community for people living
with Parkinson's disease1
Launched in April 2012 for US
audiences, Parkinson's More Than Motion is designed
to educate people living with PD and caregivers that PD is more
than just a movement disorder. This message is carried through a
variety of multi-media and social channels including the
community's Facebook page, the Parkinson's Well-Being Map,
the Parkinson's More Than Motion magazine, appearances at PD
advocacy events and medical meetings, and a video reality series
documenting the lives of PD patients.
"The Parkinson's More Than Motion Facebook page is a
helpful resource for those interested in learning more about PD.
The online community invites people with PD, their families,
friends and caregivers to add their voices and join the
conversation about the range of PD symptoms," said Forrest Gregg, a Pro Football Hall of Fame
Player and Coach diagnosed with PD in 2011. "Continuing to raise
awareness about PD and the significant impact it can have on
individuals as well as on families is important to improving
overall PD care."
By providing helpful information and allowing members of the PD
community to connect, engage and learn from each other, the
community has grown markedly since its inception and has reached a
significant number of people living with PD:1
- 42,937 "likes" on Facebook (as of April
5, 2013)
- 1,000+ people "talking about" Parkinson's More Than
Motion content by commenting on it, liking it, or sharing
it
- 7,000+ Facebook users reached per week
- 1,000+ magazine subscriptions
Forrest Gregg, who was recently
featured in his own More Than Motion reality style
video series, will be in attendance at the WPC for a "meet &
greet" and to discuss how PD has impacted his life. To learn more
about Parkinson's More Than Motion™ and to view Forrest Gregg's video series, visit
www.facebook.com/parkinsonsmorethanmotion.
Abstract title: The Parkinson's Well-Being Map - a
visual tool to support patient communication with their care
team2
The Parkinson's Well-Being Map was developed as a visual
dialogue tool to support people with PD to monitor their condition
and to facilitate communication with their healthcare
professionals. It was developed in consultation with people with
Parkinson's and their caregivers, and in collaboration with the
European Parkinson's Disease Association, The Cure Parkinson's
Trust (UK), and the Federacion Espanola de Parkinson (Spain).
The Parkinson's Well-Being Map provides an "at-a-glance"
visual representation of a patient's disease status. It consists of
a radar chart with eight radial axes, each representing a
functional domain: sleep disturbances, attention/memory, digestion
and the gut, movement, bladder and sexual function, pain, mood and
other non-motor symptoms. People with Parkinson's disease rate how
frequently they experience symptoms on a scale of 0–4 (never,
occasionally, sometimes, often, always). It has been developed in
print and online formats and can be accessed at
www.parkinsons-voices.eu/well-being-map.
"The great interest in the Parkinson's Well-Being Map
from people living with Parkinson's over the last 12 months has
demonstrated the need for a simple aid to help people record and
communicate the many symptoms they experience to their healthcare
teams. Feedback from users is helping us to enhance the Map and
make it even more user friendly, "said Lizzie Graham, Director, Fundraising and Global
Communications, European Parkinson's Disease Association.
NOTES TO EDITORS
About The World Parkinson Congress
The triennial World Parkinson Congresses are designed, hosted,
and run by the World Parkinson Coalition Inc., a US-based nonprofit
organization dedicated solely to this event and to ultimately
bringing the global PD community together. The philosophy of the
organization is to bring the diverse PD community together and to
create a space for cross-fertilization of delegates' ideas,
research projects, and collaboration with the expectation that this
opportunity will help expedite the discovery of both the cause and
cure of PD.
About Parkinson's Disease (PD)
Approximately 4-6 million people worldwide and 1 million
Americans currently live with PD, a chronic, progressive,
neurological disease that occurs when certain cells in the brain
stop producing enough of a chemical called dopamine.3,4
Dopamine plays several important roles in the body, and a lack of
dopamine can cause a wide range of symptoms affecting multiple body
systems.4 The symptoms of PD include both motor and
non-motor symptoms. Motor symptoms include shaking or tremor at
rest, slowness of movement called bradykinesia, stiffness or
rigidity in the arms, legs or trunk and trouble with balance and
falls.3,4
About UCB
UCB, Brussels, Belgium
(www.ucb.com) is a global biopharmaceutical company focused on the
discovery and development of innovative medicines and solutions to
transform the lives of people living with severe diseases of the
immune system or of the central nervous system. With more than
9,000 people in about 40 countries, the company generated revenue
of EUR 3.4 billion in 2012. UCB is
listed on Euronext Brussels (symbol: UCB).
References
1. Rubin ZA & Levin A. The Social
Movement: Building the More Than Motion™ Facebook Community
for People living with Parkinson's disease. Presented at World
Parkinson Congress October 3rd, 2013.
Abstract Number 1015.00
2. Graham L, Galvez M, et al. The
Parkinson's Well-Being Map™ – a visual tool to support
patient communication with their care team. Presented at World
Parkinson Congress October 3rd, 2013.
Abstract Number 1057.00
3. Parkinson's Disease Overview, National
Parkinson Foundation. Accessed 19th August
2013 from: http://www.parkinson.org/s-disease.aspx
4. Parkinson's disease, National Institutes of
Health. Accessed 19th August 2013
from:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001762/
Further information
Andrea Levin, Associate Director, PR &
Communications, UCB, Inc.
T +1.770.970.8352,
andrea.levin@ucb.com
Eimear O'Brien, Director,
Global Brand Communications, UCB
T + 32 (2) 559
92 71, eimear.obrien@ucb.com
Laurent Schots, Senior
Manager, Media Relations, UCB, Inc.
T +32 (2) 559
9264, Laurent.schots@ucb.com
Parkinson's More Than Motion™ and Parkinson's Well-Being Map™
are trademarks of the UCB groups of companies. © 2013 UCB, Inc.,
Symra, GA 30080. All rights reserved
SOURCE UCB, Inc.
