UCB highlights educational support programs for people living with Parkinson's disease at the World Parkinson Congress
- Posters presented on the Parkinson's More Than Motion™ community and the Parkinson's Well-Being Map™
- Pro Football Hall of Fame Player and Coach Forrest Gregg in attendance to share his experience of life with Parkinson's disease
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
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).
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/
Andrea Levin, Associate Director, PR & Communications, UCB, Inc.
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Eimear O'Brien, Director, Global Brand Communications, UCB
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Laurent Schots, Senior Manager, Media Relations, UCB, Inc.
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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
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