Paul Murphy’s Post

**Let's turn the world purple for Epilepsy Awareness Day! ** Epilepsy is a common neurological condition that causes seizures. By raising awareness, we can help break down stigma and ensure everyone with epilepsy feels supported. How can you help? Wear purple today! Share this post to spread awareness. Donate to organizations supporting epilepsy research and advocacy. Learn more about epilepsy: Epilepsy Foundation: epilepsy.com Together, we can create a world where everyone with epilepsy feels understood and empowered. #NationalEpilepsyAwarenessDay #PurpleDay #Epilepsy #EndEpilepsyStigma

“Living with pain is not a choice, but how we support those in pain is.” Julia Johnston For this #TestimonialTuesday during #SeptemberPainAwarenessMonth, we are inspired by the stories of those championing better pain management for children everywhere. At ChildKind, we believe in the Five Principles of pediatric pain care: Assessment, Prevention, Advocacy, Partnership, and Education. These pillars guide our mission to improve the quality of life for children worldwide. Do you integrate the 5 Principles of ChildKind in your practice? Comment below to share how you are making a difference! Help us expand our reach and impact—donate today at https://lnkd.in/gbbve2Fg to bring comfort and care to children in need. #ChildKind #DonateNow #PediatricPain #GlobalHealth #CompassionateCare #PainAwareness

Having FSHD, this summarizes it in a simple way.

NASHIA is thrilled to announce that registration is now OPEN for our upcoming two-part webinar series, "Facilitating Effective Communication and Support Between Brain Injury Advisory Councils and State Brain Injury Programs and Other State Agencies." The goal of these trainings is to cultivate interactions between people with lived experience and state agencies where everyone feels heard, validated, and accommodated. Participants will walk away with several strategies that can lead to successful communication between these parties with a focus on better supporting the needs of people with brain injury in advocacy. We encourage participants to join both webinars to hear the perspectives of both parties. Led by experts in the field, this training will provide you with practical tools and strategies to foster more effective interactions. Register for Session One: https://lnkd.in/e4EXVj5k Register for Session Two: https://lnkd.in/e-6Q5Y77 #BrainInjuryAwareness #EffectiveCommunication #Training #NonprofitEvent #SupportAndEmpower #RegisterToday

Despite being one of the most common forms of Muscular Dystrophy in adults and children, and causing whole of body, life long disability in thousands of Australians, Facioscapulohumeral Dystrophy is not well known and many within our patient community find it difficult to access a diagnosis, care and support. FSHD Global Research Foundation is advocating for our patient community, driving systemic improvement around diagnostics, clincial trial readiness and clinical care as Australia's peak body for FSHD. We target improved quality of life for people living with FSHD and work to fast-track therapies through our funded research, advocacy programs, industry partnerships and patient engagement services. Help us raise awareness for this cruel and relentless disease, and support our advocacy program by donating through your hands, heart, or wallet. #FSHD #clinicaltrialreadiness #advocacy

This is a MONUMENTAL day for Down syndrome advocacy! Today, GLOBAL champion Cathy McMorris Rodgers introduced the game-changing DeOndra Dixon INCLUDE Project Act of 2024. Named after beloved GLOBAL Ambassador and Quincy Jones Exceptional Advocacy Awardee DeOndra Dixon, this legislation will formally establish the INCLUDE (Investigation of Co-occurring conditions across the Lifespan to Understand Down syndrome) Project at the National Institutes of Health (NIH). It is the culmination of years of tireless advocacy led by GLOBAL and including self-advocates with Down syndrome and their families, scientists and medical care professionals, and champions in Congress and at NIH. We are so grateful to Congresswoman McMorris Rogers for her dedicated leadership in creating a powerful future for all people with Down syndrome. GLOBAL would also like to thank Congresswoman Rosa DeLauro and Congressman Tom Cole for their leadership in establishing and funding INCLUDE in 2018. Huge thanks to Representatives Diana DeGette and Eleanor Holmes Norton for co-sponsoring this important legislation. Please urge your members of Congress to stand with us and support this bill! Read more here: https://bit.ly/49cLtbF #downsyndromerocks #dsrocks #downsyndromelove #downsyndromeawareness #t21 #globalrocks #downsyndromeworld #downsyndrome #nonprofit #denvernonprofit #disabilityinclusion #disabilityawareness #disabilityrights #congress

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Did you know… 1 in 700 babies are born with a cleft each year globally, with over 1,200 born in the UK alone. This condition is very close to one of our Davies and Partners Solicitors colleague’s heart so we’re sharing this article to help raise awareness. A cleft is thought to be caused by a combination of different genetic and environmental factors. Children born with a cleft need specialised bottles and the care pathway is for 20 years. Children typically have several surgical procedures in their early years: - The gap left by a cleft is usually operated on before a child’s first birthday - cleft lips are often repaired with 1 or 2 surgeries from the age of 3 months - a cleft palate is operated on from around 8 to 12 months. - children with a cleft that involves their gum may need a bone graft procedure when they are 7-12 years old to make sure their adult teeth come through properly. Just like every child, every cleft is unique, and every family will face unique challenges including problems with their speech, teeth and hearing. 4 - 12 May 2024 is #CleftPalateAwarenessWeek which aims to foster understanding and support for families facing this journey. This piece explores more about clefts and how supporting Cleft Lip and Palate Association (CLAPA) can make a difference for children and their families.

Although World Heart Rhythm Week has concluded for another year, our mission is to raise awareness of Heart Rhythm disorders every hour, of every day. You can help us in this mission. Access our Patient Advocacy Toolkit and find out how you can support our campaigns: https://loom.ly/ZVXJseQ #WHRW2024 #ActSmart #YouOnlyHaveOneHeart #ArrhythmiaAlliance #Arrhythmia #Rhythm #HeartRhythm #PatientAdvocacy #PatientAdvocacy

Join Us for the 2024 End Endo 5K – Let's Move to Make a Difference! From September 16-22, we invite you to join endo allies across the country for the End Endo 5K, a virtual event dedicated to raising awareness and funds for EndoFound! What is the End Endo 5K? The End Endo 5K is a unique event where participants around the world come together to move 5 kilometers (or 3.1 miles!) in any way they choose. Whether you walk, run, hike, bike, or even rollerskate, your participation helps support crucial research, education, and advocacy efforts for endometriosis. Why Join? Endometriosis affects millions of people, causing pain and complications that impact daily life. By participating in the End Endo 5K, you are taking a stand to bring hope and change to those affected. Your efforts will help fund groundbreaking research and provide support to those in need. Learn how you can participate here: https://lnkd.in/gP7kEkha