Emily Silverberg’s Post

Excited and grateful for this new bill - The National plan to End Parkinson’s Act. From the Parkinson’s Foundation: Top 5 ways this monumental bill can make an impact: 1. Dramatically increase federal research funding. 2. Develop more effective pathways for treatments and cures. 3. Improve early diagnosis. 4. Spark new and improved models for patient care. 5. Address health disparities in diagnosis, treatment and clinical trial participation.

During my son’s recent overnight EEG, we participated in a study to test a prototype device to prevent #SUDEP. We are hopeful for new devices and technologies that can help parents and caregivers monitor while their loved ones with epilepsy sleep. You can help too by understanding #SUDEP and raising awareness for risks. #talkaboutSUDEP #innovativemedicaldevices #sudepprevention #pediatricsudep #researchepilepsy #cureepilepsy Epilepsy Foundation

Did you hear the news?! 📣 Last week Congress Passed the National Plan to End Parkinson's Act! On May 23, the U.S. Senate unanimously passed the National Plan to End Parkinson’s Act, marking a historic milestone as the first-ever federal legislation dedicated to ending Parkinson’s disease (PD). This groundbreaking bill now heads to President Biden’s desk to be signed into law, having previously received overwhelming bipartisan support in the U.S. House of Representatives in December. This bill passed thanks to the combined efforts of The Michael J. Fox Foundation for Parkinson’s Research, the Unified Parkinson's Advocacy Council (which PFWPA is a proud member of), and the greater PD community in the fight against Parkinson’s disease. This landmark bill has the potential to revolutionize the lives of the one million Americans living with Parkinson’s. It is designed to: - Dramatically increase federal research funding - Develop more effective pathways for treatments and cures Improve early diagnosis Spark new and improved models for patient care - Create standards and measures to prevent Parkinson’s disease - Address health disparities in diagnosis, treatment, and clinical trial participation Enhance public awareness of the disease The passing of this act represents a giant leap forward in the battle against Parkinson’s, bringing hope and concrete action to those affected by the disease. Read more about it here: https://lnkd.in/esK2kAuh #parkinsons #parkinsonsdisease #parkinsonsadvocacy #parkinsonsawareness #parkinsonssupport

After struggling for years to receive a diagnosis for an autoimmune condition, Laura, a research scientist and mother of four, still must fight to maintain her condition affording copays for doctor’s visits and high prescription costs, on top of working, caring for her family, and helping to coach the local soccer team, Laura wants nothing more than to remain healthy and active. Have you faced challenges like these? Tell us about it or share this post! #SincerelyUs

🗣️ Discussing is vital for awareness and awareness is vital for research & development, and, in the end, access to better treatment and quality of life. In 2018, #Discuss was the name given to an extensive survey of caregivers of patients with Dravet syndrome on experiences of diagnosis, seizure burden, management, social and financial impact, and health services use, administered online in 10 languages. With over 580 unique responses from caregivers of pediatric (83%) and adult (17%) patients with Dravet syndrome (aged <1–48y), the survey remains to date a milestone for the Dravet community and an impactful exercise of collaboration between members of the Dravet Syndrome European Federation. 👉 One of the main findings derived from the responses was that less than 10% of patients were seizure free, but the full report - available in the comments - includes many more valuable data. Six years after Discuss, a world free of Dravet Syndrome still seems far from being an achievable target, however it remains the vision of our Federation. Join us in celebrating 10 years since our foundation and remember the cornerstones of our activity. 🎆 #DSEF10 #DravetSyndrome #Fight4DravetPatients

This lecture looks brilliant! Advance planning and informed, supported decision-making are essential in any long term neurological condition. With MND the timescale and impact of the condition mean these discussions need to happen regularly, as part of a journey, and with space to revisit and change decisions. It sounds like this lecture will address all this and more - perhaps we'll see you there? #ACP #palliativecare #neuropalliative #MND

While awaiting anticipated reform having access to high quality support from an experienced indemity organisation is very valuable.

In February 2023, Getting It Right First Time (GIRFT) published a new national pathway for suspected Cauda Equina Syndrome ("CES"). The pathway provides a national framework for the diagnosis and treatment of suspected CES with the aim to diminish unwarranted variation in treatment, improve outcomes and reduce litigation. GIRFT have now published a web-based interactive version of the pathway designed to be used by clinicians, nurses and allied health professionals but accessible to all: https://lnkd.in/eyf4eA8F. To read the article I previously published about the pathway please click here: https://lnkd.in/eG5hBngx

Palliative care advisory councils work to expand awareness of and access to serious illness care in their states. Check out our latest brief that highlights lessons learned from palliative care advisory councils in Maine, Maryland, and Texas. Learn more: https://loom.ly/uqhD2YI

Historic Milestone: The National Plan to End Parkinson’s Act was passed last week by the US Senate. This groundbreaking legislation will unite efforts to: - Prevent Parkinson’s: Establishing a national strategy to tackle the disease head-on. - Find a Cure: Accelerating research and development towards a cure for Parkinson’s. - Support Patients: Ensuring access to necessary care for those living with Parkinson’s. Reference: https://lnkd.in/dFRqQxqB #ParkinsonsDisease, #CureParkinsons