World Duchenne Organization’s Post

May is #NECawareness Month! We'd love to hear what you are doing to help raise awareness and funds so we can #preventNEC! We chose May to be NEC Awareness Month because mothers are essential to our work of advancing NEC research, education, and advocacy. We will only build a world without NEC by partnering with and elevating mothers. Mothers provide the most protective therapy against NEC—their milk. Science is essential to our vision of a world without NEC, but it takes an average of 17 years for research evidence to reach clinical practice. We chose the 17th of May because we cannot wait 17 years for today’s emerging NEC research to reach our babies in the NICU. We need to prevent NEC now. We need a world without NEC today. Our motto “from pain to power” recognizes the profound heartache that follows a NEC diagnosis. The pain caused by NEC often stays with us for a lifetime. It takes remarkable strength to channel our anguish into helping other families and driving our organization's mission. The NEC Society is working tirelessly to accelerate research, raise awareness, and build a world without NEC by keeping babies and families centered in everything we do. We invite you to share how NEC has impacted your life and support the NEC Society by recognizing NEC Awareness Month. You can join our movement at https://lnkd.in/gmxU8Px3

Presenting my poster!

A little bit about Jean-Arellia Tolentino, Ph.D.- “I am: a psychologist, a researcher, a community organizer, an educator, a Filipina American, a daughter/mother/sis/partner, and the list may go on. I share this, because often therapists don’t, and to note that my work as a therapist has been cultivated from a myriad of paths taken to get through this thing called “life”. As such, I know that one’s life path can change, and depending on your context, can feel like you’re taking the same path yet have a vastly different journey and destination.” Join us at the Bukambibig Symposium (Word of Mouth) for a thought-provoking panel titled “Finding, Creating, and Cultivating Kapwa,” where we explore the power of identity, culture, community, and healing from trauma. This panel will feature influential leaders from diverse sectors, including nonprofit, healthcare, government, and technology, each bringing unique perspectives on what it means to serve and thrive in community. This conversation is more than a panel—it’s a space to reflect on how community can be a source of healing and strength. ❤️ Let’s come together to explore Kapwa and heal through community. USE CODE fylprofam for 30% off: https://lnkd.in/giv54uX4

🎉 Get Ready for JOMO Night! Calling all young adults with Myositis! 🎉 We’re thrilled to invite you to JOMO Night, an exciting virtual talent showcase designed exclusively for young adults with myositis aged 18-40. This is your chance to shine and share your unique talents in a supportive and vibrant community. Event Details: Date: Monday October 14th 2024 Time: 7 PM ET / 6 CT / 5 MT/ 4 PT Location: Virtual Event (Zoom Link to be shared upon registration) Who Can Participate: Performers: Must be Myositis patients or their care partners Attendees: Open to young adults aged 18-40, including friends and family members How to Join: Sign Up to Showcase: If you’re a myositis patient or care partner and want to perform, fill out our registration form to secure your spot and let us know what talent you’ll be sharing. RSVP as an Attendee: If you’re here to enjoy the show and cheer on our performers, register to join us for an evening of creativity and connection. Spread the Word: Share this post with friends and family who might be interested in joining us! Let’s celebrate the Joy of Missing Out on daily pressures and embrace creativity, connection, and joy together. All talents and skill levels are welcome! ✨ Register now and be part of something special! ✨ https://linktr.ee/myositis #JOMONight #TalentShowcase #MyositisAwareness #YoungAdultsWithMyositis #VirtualTalentShow #JoyOfMissingOut #CreativityAndConnection #SupportiveCommunity #CelebrateTalent

🎉 Get Ready for JOMO Night! Calling all young adults with Myositis! 🎉 We’re thrilled to invite you to JOMO Night, an exciting virtual talent showcase designed exclusively for young adults with myositis aged 18-40. This is your chance to shine and share your unique talents in a supportive and vibrant community. Event Details: Date: Monday October 14th 2024 Time: 7 PM ET / 6 CT / 5 MT/ 4 PT Location: Virtual Event (Zoom Link to be shared upon registration) Who Can Participate: Performers: Must be Myositis patients or their care partners Attendees: Open to young adults aged 18-40, including friends and family members How to Join: Sign Up to Showcase: If you’re a myositis patient or care partner and want to perform, fill out our registration form to secure your spot and let us know what talent you’ll be sharing. RSVP as an Attendee: If you’re here to enjoy the show and cheer on our performers, register to join us for an evening of creativity and connection. Spread the Word: Share this post with friends and family who might be interested in joining us! Let’s celebrate the Joy of Missing Out on daily pressures and embrace creativity, connection, and joy together. All talents and skill levels are welcome! ✨ Register now and be part of something special! ✨ https://linktr.ee/myositis #JOMONight #TalentShowcase #MyositisAwareness #YoungAdultsWithMyositis #VirtualTalentShow #JoyOfMissingOut #CreativityAndConnection #SupportiveCommunity #CelebrateTalent

The UK National Screening Committee would like suggestions for seminars ➡️ The more people that suggest Breast Density education, the more awareness will be raised. How can you help: 3 easy steps. 1. Click on form, below 2. Type your name and email 3. Type: Breast density education". SUBMIT #Learning #EducationSavesLives https://lnkd.in/dAjQhz8R

GOBEL’s latest blog, "Utilizing Grateful Patient Data to Enhance Fundraising Efforts in Academic Medical Centers" is now live! Explore how academic medical centers can unite grateful patient and university donor data for fundraising success. Discover insights, common challenges, and practical strategies to guide your organization towards enhanced donor interactions. Read the full post here: https://hubs.la/Q02mhStX0. #Healthcare #Philanthropy

To celebrate #WorldBlindnessAwarenessMonth and #WorldSightDay, we asked employees what inspires them to work in an ophthalmology-focused organization and why they think this month is so important. Inside Sales Development Manager Christene Cloer said, "Seeing is more than a mere biological function; it is a profound way of engaging with the world. Through vision, we do not just observe reality - we participate in it, shape it, and are shaped by it. Vision is the gateway through which we interpret the world." Visit the links in our comment section to join us in raising awareness and learning more about the importance of eye health. 👁️ #VisionAwareness #Ophthalmology

🌟 Happy Clinical Trials Day! 🌟 Today, we honor the unsung heroes—the patients, researchers, and healthcare professionals—who tirelessly contribute to advancing medical science through clinical trials. Their dedication fuels progress and brings hope to countless lives. In the latest episode of the Retinal Realities Podcast, titled “Hope in Trials: A Stargardt’s Patient’s Perspective", available on Spotify at https://bit.ly/4c2wDFV, Claudette and Karen engage in a heartfelt conversation with Melanie Nel. Melanie shares her firsthand experiences as a participant in the SeaSTAR - Stargardts Clinical Trial. Tune in to discover her insights, learn about groundbreaking research, and witness the resilience of those on the frontlines of medical discovery. Clinical trials play a pivotal role in Stargardt disease management. They drive progress, offer personalized treatments, and empower patients to actively shape their own healthcare journey. Let’s celebrate these trials—the heartbeat of progress—as they pave the way for a brighter future in healthcare. 💙🔬👏 #ClinicalTrialsDay #HealthcareHeroes #ResearchMatters #genetictesting #RetinaSA #RetinalRealitiesPodcast #Podcast #Stargardts #clinicaltrials #medicalscience