Osborn Barr Paramore (OBP)’s Post

𝗜 𝗮𝗺 𝗱𝗲𝗲𝗽𝗹𝘆 𝗵𝗼𝗻𝗼𝗿𝗲𝗱 𝘁𝗼 𝗮𝗻𝗻𝗼𝘂𝗻𝗰𝗲 𝘁𝗵𝗮𝘁 𝗜 𝗵𝗮𝘃𝗲 𝗯𝗲𝗲𝗻 𝗲𝗹𝗲𝗰𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝗕𝗼𝗮𝗿𝗱 𝗼𝗳 𝘁𝗵𝗲 EBF3 HADDS Foundation When my daughter was diagnosed with 𝗘𝗕𝗙3 𝗛𝗔𝗗𝗗𝗦, our lives took an unexpected turn. Navigating the complexities of this rare genetic disorder has been both challenging and informative. Throughout this journey, my passion for raising awareness and helping other families facing similar challenges has grown immensely—it has become my legacy. I want to extend my heartfelt gratitude to the EBF3 HADDS Foundation Board for trusting me to contribute to the incredible work they've already accomplished. The EBF3 HADDS Foundation has been a beacon of hope, providing invaluable resources, support, and advocacy for those affected by this condition. As a Board member, I am excited to: • 𝗔𝗱𝘃𝗮𝗻𝗰𝗲 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵: Support initiatives that fund groundbreaking research aimed at better understanding EBF3 HADDS and developing effective treatments. • 𝗘𝗻𝗵𝗮𝗻𝗰𝗲 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀: Create programs and campaigns to educate the public and healthcare professionals about HADDS, ensuring earlier diagnoses and interventions. • 𝗦𝘁𝗿𝗲𝗻𝗴𝘁𝗵𝗲𝗻 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗦𝘂𝗽𝗽𝗼𝗿𝘁: Build a strong network where families can connect, share experiences, and access essential resources. This is more than a role—it's a commitment to making a meaningful impact in our community. I believe that together, we can amplify our efforts to bring hope and support to all those affected by HADDS. 𝗜 𝗶𝗻𝘃𝗶𝘁𝗲 𝘆𝗼𝘂 𝘁𝗼 𝗷𝗼𝗶𝗻 𝘂𝘀 𝗶𝗻 𝘁𝗵𝗶𝘀 𝗺𝗶𝘀𝘀𝗶𝗼𝗻. Your involvement, whether it's sharing this message, participating in our events, or simply educating yourself about EBF3 HADDS, is crucial. Every action you take makes a significant difference and is deeply appreciated. To the EBF3 HADDS Foundation Board, your dedication to this cause is truly inspiring, and I am grateful to each and every one of you. #HADDSFoundation #EBF3HADDS #EBF3 #Hypotonia #Ataxia #RareDiseaseAwareness #RareDisease #CommunitySupport #Advocacy #GeneticDisorders #Genetics #Science #DNA #Research #Genes #Health #Scientist #Gene #Genomics #RareCare

HealthCare at Dubai

Attention Pennsylvania Borough Managers! Don't miss the opportunity to connect with us at the upcoming PSAB conference next week. Swing by our booth for a chance to win two tickets to a Phillies, Pirates, or Bears game! Plus, let's discuss how GESA Performance Contracting can help you modernize and efficiently manage your township facilities. See you there! #PSAB #PABoroughManagement #FacilityModernization #PerformanceContracting #EnergyEfficiency #GESAContracting #PartnerwithCM3

ECPAT UK responds to the Home Office evaluation of local NRM decision-making pilots. Findings show: ▶ Timely decisions ▶ Improved multi-agency working ▶ Increased awareness at the local level of the NRM process. We remain critical of the current limitations in particular the exclusion of children who are 100 days from their 18th birthday, age disputed young people, children being considered for a Public Order Disqualification. We urge the ukhomeoffice content to commit to a full roll out of these pilots and remove the barriers for children currently excluded. https://lnkd.in/eq9YsjGz

FREE NDIS WEBINAR for your clients 📢 Navigating the NDIS can be overwhelming, particularly when it comes to choosing how to best manage your NDIS Plan. If you have clients who need help managing their plan, this is the webinar for them! Join the Experts at Plan Hero Plan Management for their FREE webinar to find out how plan management can help you manage your NDIS plan effectively and optimise your funding. Register (FREE) here: https://lnkd.in/gG86meZT #MyCareSpace #NDIS #PlanManagement #PlanManager #PlanHero #NDISPlan 

As part of Cygnus Academies Trusts commitment to preventing falls from heigh we are both celebrating and reinforcing the message delivered by the No Falls Foundation’s #NoFallsWeek campaign. We look at preventative measures to prevent falls from height across our entire establishment from not standing on desks & chairs to change display boards, to correct roof access including permit to work for our premises teams & contractors. Providing correct information, training and the correct tools to complete the job are critical as well as regular refreshers, reminders and tool box talks. Thinking before stepping up off of the ground, assessing the risk and using the correct access equipment for the job is essential, No excuses. Falls from height can change a life in an instant, think before you step up.

We're excited to announce that this coming Friday, 29 November, we’ll be hosting a milestone event in Sydney to launch the On Us: Australian Business Coalition for Safeguarding Children Child Safeguarding Business Principles. This initiative is designed to bring businesses of all kinds into the conversation about child safeguarding, ensuring that every company – whether they work directly with children or not – takes steps to protect children and young people. Joining forces with our founding On Us members, including Westpac, TikTok, IHG Hotels & Resorts, TBWA\Australia, and The GPT Group, we're working to make safeguarding a standard part of business practice across industry. We look forward to sharing more with you about the event and Principles – together, we're creating safer environments for children. onus.org.au #OnUsEvent #OnUs 

So excited that On Us: Australian Business Coalition for Safeguarding Children will be launching the Child Safeguarding Business Principles in Sydney/Gadigal this Friday. These principles will guide businesses who are not legally obliged to follow any child safeguarding principles/standards to ensure their products, services, people and supply chains do not inadvertently put children and young people at risk. Watch this space for the release of the principles! #excited

BLOG: We're taking a look at the proposed NDIS Navigator, a support that will help you understand the NDIS and find both NDIS and mainstream services. In today's blog, we're investigating whether navigators will specialise. Do you think NDIS Navigators are a good idea? 👉 Read more: https://buff.ly/3ChBQwS

Have you seen the latest edition of our MND NSW News? It's available now, so visit https://lnkd.in/ghFHMDeh to have a read! You can also sign up to our email newsletter and get it delivered direct to your inbox, so you're always up to date on everything happening at MND NSW! #MND #MNDNSW #ALS #news #uptodate #newsletter