The Michael J. Fox Foundation for Parkinson's Research’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.

At Generation Patient, we are focused on three policy areas impacting young adult patients. Learn more here about how we are approaching these three areas of focus below. https://lnkd.in/gupnEFRD

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

Come and be a part of our Case Study Club tomorrow, June 5th at 12pm EST. We're excited to delve into discussions on the following cases: ⁠- A "nerve condition" in a 30 year old female - numb arms. - What does the “absence” look like? This is the epi-crisis where someone can be a bit absent-minded right up to a full flown coma. We will watch the video of a dog in an absence epi-crisis. - Constellations in a 6-day-old newborn due to a difficult birth (with CT pics). This is common for infants with traumatic births. Restless Leg Syndrome and Kidney Collecting Tubules in a 63-year-old female We will also address: - How SBSs all act the same way regardless of our age or species - Complicated births and how to help the babies after - How receiving a diagnosis from a healthcare professional can cause DHS’s. When we understand GHK, it’s important to determine when and how to use the medical establishment to your advantage. It can be done successfully, however, we need to know how. Your participation is valuable, and feel free to invite anyone who might find these cases beneficial! Check out https://lnkd.in/eT7WZzat to secure your spot NOW!

🗣️ 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

Check out this interesting case! What are your opinions? Appreciate any comments. More to come. #orthopedics #orthopediconcology #sarcoma #bonetumor #msk #mskrads #orthobullets #limbsalvage Orthobullets

🧠💡 Today marks International Epilepsy Day! Dear Healthcare Professionals, let's unite to raise awareness and understanding about epilepsy. By educating your patients and communities, you can dispel myths, reduce stigma, and provide vital support to those living with this neurological condition. Together, let's empower patients with accurate information and compassionate care. AJAY YELEGAONKAR Digital Marketer For You #InternationalEpilepsyDay #EpilepsyAwareness ##Epilepsy

On November 8th at 2PM Pacific and 5PM Eastern, United Spinal Association will host a special Advocacy Live that will open your eyes about physician-assisted suicide, as practiced in California and the 9 other states where it has been legalized. Please register for this event at: https://lnkd.in/gY7h45aV On November 8th, voice your opinion on one of the most important issues facing our community. Join our panel of experts at a virtual Advocacy Live on physician-assisted suicide in California. Learn why United Spinal Association is suing the state of California to stop the practice of physician assisted suicide—and what a victory would mean for the future of our community. Learn why the American Medical Association opposes physician assisted suicide—and discuss how we can build broader momentum. Do doctors have the power to prescribe lethal medications to people with disabilities overwhelmed by either traumatic onset or the struggle to live independently in the community? Let your peers know what you think. Know your rights. Consider alternatives. Meet Michael Bien, attorney for United Spinal and other plaintiffs; Ingrid Tischer, plaintiff; Anita Cameron, representative of plaintiff organization Not Dead Yet; and James Weisman, General Counsel of United Spinal Association.