PD Avengers

The World Health Organization 's Brain Health unit has a programme on access to neurological medicines. In fact, later this month, on July 23rd (14:00 CEST), we will launch a report entitled ‘Improving access to medicines for neurological disorders’ during a webinar. Using epilepsy and Parkinson disease as tracer conditions, the report highlights the wide unavailability and unaffordability of these medicines, explores the different health system barriers affecting access and offers a framework for multi-level, multi-sectoral actions to address the many challenges identified. Register here: https://lnkd.in/gYCAgR-6 The link to register for the launch is the following: https://lnkd.in/gYCAgR-6

#ParkinsonsDisease (PD) doesn’t sleep. But by studying the data on its impact on sleep, we can better support patients and help them be more aware of their symptoms. Explore the results from a recent patient survey developed by PD Avengers: https://bit.ly/3xOkrKh [Video description: On-screen text outlines the five most common symptoms PD patients report experiencing during sleep, including frequent awakenings; insomnia; bradykinesia; rigidity; and nocturia. On-screen text, “We are proud to sponsor the PD Avengers SLEEP survey.”]

Thanks to everyone who signed up and attended our webinar on SLEEP survey results. For those who missed it, here's the encore presentation: https://lnkd.in/gQ8qej-z

We extend our sincere gratitude to the members of the PD Avengers and the Parkinson's community for participating in our SLEEP Webinar. We are thankful for the opportunity to collaborate with AbbVie on this important research and hope that the insights shared were beneficial. It was enlightening to hear everyone's perspectives and challenges regarding sleep issues associated with Parkinson's disease. For those who were unable to attend, detailed information about the findings is available on our website. (https://lnkd.in/eHbEztpm) We look forward to hosting more webinars in the future. #Parkinsons #sleepresults #pdavengers #sleepwebinar

✨ Part three of the SLEEP Survey results! ✨ In case you missed the Sleep Webinar, here are some key insights from AbbVie's research, presented by Larry Gifford about gender difference and symptom management. The data suggest that there are notable differences in the experiences of men and women with Parkinson’s disease, both in terms of symptoms and interactions with healthcare professionals. Women tend to report non-motor symptoms like fatigue and anxiety, while men report more motor symptoms like bradykinesia and rigidity. Discussions around sleep issues vary, with men having more frequent and perhaps more productive conversations with their healthcare providers compared to women. #sleepresults #parkinsons #pdavengers #wellness

Thank you to all who attended our webinar for the SLEEP study results. The meeting discussed the results of a global sleep survey conducted by the PD Avengers, a patient advocacy group, in partnership with AbbVie. The survey included 1,248 people with Parkinson's (PWP) and 286 caregivers across 27 countries. The data was analyzed to provide insights into the sleep-related challenges faced by the Parkinson's community. The presentation highlighted that Parkinson's disease is often characterized as a "motor disease", but it is in fact a complex, full-body neurodegenerative disorder with significant non-motor symptoms like sleep disturbances. The survey aimed to shed light on the 24-hour nature of Parkinson's and the impact on both PWP and their caregivers. The survey found that 96% of PWP reported sleep issues, with an average of 2.75 sleep disruptions per night. However, only 20% had been diagnosed with a sleep disorder, despite 72% discussing sleep issues with their doctors. The top nighttime symptoms were frequent awakenings, insomnia, and bradykinesia (slowness of movement). The survey also revealed significant impacts on caregivers, with 88% reporting at least some sleep disruption due to their partner's Parkinson's, and 25% saying their sleep is disrupted a great deal or a lot. Caregivers also reported emotional burden, stress, and concerns about the well-being of the person they care for. The presentation concluded by emphasizing the need for improved management of sleep-related issues in Parkinson's care, including thorough sleep assessments, tailored interventions, and increased awareness among healthcare providers. The survey results were described as a "clarion call" to the Parkinson's community to prioritize sleep management as an integral part of comprehensive Parkinson's care.

We extend our sincere gratitude to the members of the PD Avengers and the Parkinson's community for participating in our SLEEP Webinar. We are thankful for the opportunity to collaborate with AbbVie on this important research and hope that the insights shared were beneficial. It was enlightening to hear everyone's perspectives and challenges regarding sleep issues associated with Parkinson's disease. For those who were unable to attend, detailed information about the findings is available on our website. (https://lnkd.in/eHbEztpm) We look forward to hosting more webinars in the future. #Parkinsons #sleepresults #pdavengers #sleepwebinar

The Parkinson's "SLEEP" Study Results saga continues! 🛌 Each age group experiences a unique set of symptoms during the day and night. The most notable trend is the progression of cognitive and balance issues as age increases, along with the persistence of tremors and rigidity. #Parkinsonsleep #sleepresults #healthawarness

Fresh from her trip to Helsinki to present the results of the PD Avengers SLEEP Study (in partnership with AbbVie), cofounder Soania Mathur reflects on this disease that refuses to sleep. Sleepless in Toronto... (unshakeablemd.com)

BREAKING NEWS: President Biden signs the National Plan to End Parkinson's Bill into law. https://conta.cc/4cxXQAY