Other Parkinson`s Disease Organizations at the Unity Walk
Since DBS-STN.org started in 2003, our goal has always been to provide information to the Parkinson's Community related to deep brain stimulation surgery. While the focus was in the STN, we know DBS is successful in other areas. To make it clear that our organization is for anyone considering DBS surgery of any type, in March 2013 we were renamed DBS4PD.org.
DBS4PD.org is committed to helping improve the quality of life of DBS-STN patients and their caregivers. Through patient and caregiver surveys, we are not only asking questions but providing answers that will help the DBS-STN community. Our survey questions compare people living with Parkinson’s – both with and without DBS. Please join us in coming together, discussing issues, and answering questions.
Fox Insight is a virtual research hub to track the PD experience by aggregating subjective and objective data submitted by patients and their loved ones over time. Through Fox Insight, the PD community can finally share their unique PD experiences so that scientists can better focus their research efforts to address the greatest needs facing patients today.
There are three main ways to engage with Fox Insight: (1) Web portal – Participation in Fox Insight begins by enrolling online. Participants complete a “virtual study visit” once every 90 days, sharing data related to their symptoms, medical history, family neurological history and quality of life; (2) Wearable devices – Wearable devices offer the ability to more accurately measure and track patterns in movement using built-in sensors. Currently, Fox Insight supports a study using the Pebble watch (in the future, we hope to support users on multiple platforms); Smartphone apps – The Fox Insight smartphone app allows users to report such information as medication and mood in real-time, while allowing for the continuous passive streaming of data from the companion smartwatch. The long-term vision is to develop one Fox Insight app for iPhone and for Android alike.
Fox Insight is open to anyone – with or without Parkinson’s – who is interested in sharing their health information to advance research. To get started, go to www.foxinsight.org.
Fox Trial Finder is a web-based clinical trial matching tool to assist both those with and without Parkinson’s disease in identifying and connecting with Parkinson’s clinical research opportunities that urgently need their participation. After volunteers input information on themselves (such as zip code, date of birth, and brief medical history), Fox Trial Finder will provide potential trial matches. Fox Trial Finder also provides the opportunity for volunteers to connect directly with trial coordinators through a secure messaging interface on the site.
Register for Fox Trial Finder by visiting www.foxtrialfinder.org and raise your hand to participate in clinical research for PD today!
The National Institutes of Health (NIH) is the nation’s medical research agency. The National Institute of Neurological Disorders and Stroke (NINDS), a component of the NIH, is the nation's primary supporter of biomedical research on the brain and nervous system. It offers information on research support and free publications for patients and their families on Parkinson’s disease and other neurological disorders. Members of the NINDS staff will be available at the exhibit booth to answer questions about research on Parkinson’s disease.
Team Fox is the grassroots fundraising program of The Michael J. Fox Foundation. Launched in January 2006, Team Fox is made up of thousands of people across the globe who finds fun and creative ways to raise funds and awareness for the Foundation and Parkinson’s research. Since the program’s inception, this diverse community of change-makers has raised over $45 million for Parkinson’s research and continues to grow and exceed expectations. Join Team Fox today at www.teamfox.org.
Team Hope™ is the National Parkinson Foundation's community FUNdraising program that allows people in the community to raise funds and awareness for Parkinson's however they like. These community fundraisers take the lead in planning their own event or you can participate in an endurance race and run to beat Parkinson’s. Join Team Hope™ today at www.parkinson.org/teamhope.
Formed in 2000 and co-chaired by John and Edna Ball, Team Parkinson’s mission is to raise Parkinson’s disease awareness; to raise money for research for a cure; and to empower people with PD to take charge of their lives through exercise. John has had PD for over 40 years and has completed 25 marathons plus a 31 mile ultra-marathon. For more information please visit our website www.team-parkinson.org.
The 4th World Parkinson Congress, hosted by the World Parkinson Coalition, will take place from September 20 – 23, 2016 in Portland, OR, USA. By bringing people with Parkinson’s and care partners together with some of the world’s most respected movement disorder specialists, physicians, neuroscientists, nurses, rehab specialists, the WPC 2016 will provide a vibrant and empowering international forum to discuss and learn about the latest scientific discoveries, medical practices, and care initiatives for PD.
Visit www.WPC2016.org for more information and join us in 2016!