Beacon for Rare Diseases’ Post

Transform your funding journey and schedule your FREE consultation today! Schedule your appointment here: https://lnkd.in/gGjSeWaX Introducing The Sailor Justice Project In a world where resources often remain out of reach for marginalized communities, The Sailor Justice Project stands tall with a unique mission - to utilize grant writing as a potent tool for social justice. Our mission is clear: "To use Grant Writing as my Social Justice Quirk." Through this, we envision a brighter future where businesses, particularly those championing social justice causes, can thrive and contribute to economic growth. Our vision? "To increase access to equitable funding for businesses at the intersection of social justice and economic growth through grant writing, grant education, and global community building." But why was this project founded? At the heart of it all, we recognized the transformative power of equitable funding. We saw the potential for grants to bridge the chasm of economic disparity and the opportunity to foster global communities that understand and support each other's causes. And as we work towards this vision, we live by our values: Social, Economical, and Racial Justice - Our foundation. We demand a world where everyone, regardless of their background, is treated fairly and has equal opportunities. Global Inclusion and Belonging - We create spaces where everyone feels they belong, transcending borders and cultural divides. Human Rights Advocacy - Our commitment to championing the rights of all, ensuring that every voice is heard and respected. Language Equity - 우리는 언어의 평등을 믿습니다. We believe in the power of words, and everyone's right to be heard in their own tongue. Mental Health as Community Health - We affirm that the mental well-being of one affects the whole. A community thrives when its individuals are mentally healthy. Leadership with Abundance and Care - In all our endeavors, we lead with generosity, ensuring that there's plenty for all and that every action is rooted in care. In a rallying cry to all those who share our vision and values, we proudly declare: “An #Army changing the world one grant at a time.” Join us, be part of this global army, and let's transform communities through equitable funding.

💙By infusing these principles into our societies, from laws to economies, we foster resilience over suffering. Full Episode: https://lnkd.in/ekNK_iFH #HumanHealth #AnimalHealth

This art installation is powerful. Come see it if you can

"Today, we honor the bravery, compassion, and selflessness of the Red Cross volunteers worldwide. Thank you for your unwavering dedication to humanity. Happy World Red Cross Day #DigitalPublication #AcademicJournal #OpenAccessJournal #PeerReviewed #ResearchJournal #SocialScienceJournal #MedicalJournal #TechJournal #EducationJournal #HealthJournal #ArtJournal #Literaturejournal

"Today, we honor the bravery, compassion, and selflessness of the Red Cross volunteers worldwide. Thank you for your unwavering dedication to humanity. Happy World Red Cross Day #DigitalPublication #AcademicJournal #OpenAccessJournal #PeerReviewed #ResearchJournal #SocialScienceJournal #MedicalJournal #TechJournal #EducationJournal #HealthJournal #ArtJournal #Literaturejournal

🌟 March is Autoimmune Awareness Month, a time to shed light on the millions of individuals around the world who are living with autoimmune diseases. 🌟  In support of those struggling with autoimmune diseases, ViuHealth has partnered with Lupus in Color, a patient advocacy group dedicated to providing resources and support to those living with Lupus. As part of their efforts during Autoimmune Awareness Month, Lupus in Color has released their Butterflies of Hope Magazine, featuring stories of individuals battling Lupus and highlighting the importance of awareness and support. In a recent interview within the magazine, ViuHealth 's COO, Melanie Igwe, discussed the company's mission to provide innovative and accessible healthcare solutions for individuals with autoimmune diseases. ViuHealth is committed to improving the quality of life for those living with autoimmune conditions by offering personalized care and resources to help manage their symptoms and improve their overall well-being. Through our partnership with Lupus in Color, ViuHealth is able to support individuals who are fighting their own battles with Lupus. By sharing their stories and experiences, these individuals are able to inspire others and raise awareness about the challenges of living with an autoimmune disease. To read the inspiring stories of those fighting Lupus and learn more about ViuHealth's commitment to supporting individuals with autoimmune diseases, click the link below to access the Butterflies of Hope Magazine. Together, we can work towards greater understanding, support, and resources for those living with autoimmune conditions. https://lnkd.in/esUWzRNs #AutoimmuneAwarenessMonth #LupusinColor #Lupus  #ViuHealth #Autoimmune #Healthcare 

I wanted to take a moment during Glycogen Storage Disease Awareness Week to share a highly personal post. In the process searching for answers to our idiopathic (unexplained) ketotic hypoglycemia within our family, it was discovered that we carry multiple GSD genes - a common finding among families impacted by idiopthic pathological ketotic hypoglycemia in Ketotic Hypoglycemia International. This phenomenon is called synergistic heterozygosity. Want to read more about synergistic heterozygosity in inborn error of metabolism? Check this paper out: https://lnkd.in/edDUf8VF The question of whether we have GSD or not remains unanswered, but I have faith that experts like Terry Derks and David Weinstein, M.D., M.M.Sc. will unravel the complexities of symptomatic carriers one day. In the meantime, during this Awareness Week and throughout the year, all of us in the idiopathic ketotic hypoglycemia community stand together in solidarity with the Glycogen Storage Disease communities - together we are stronger. Please take a moment to watch the inspiring video featuring a close friend and fellow advocate family of ours; Jamas LaFreniere and Margot LaFreniere, parents to little Sophie and the founders of Sophies Hope Foundation (CureGSD1b). https://lnkd.in/eT4ASJZT

🌟 Launching a Monthly Newsletter Series! 📰💙 Hello LinkedIn community! 👋 As a proud member of the awareness and information team at Huntington's Victoria, I'm excited to kick off a series of monthly newsletters dedicated to families and individuals living with Huntington's Disease. 🧬✨ In this first edition, we delve into "Empowering Choices in Family Planning for Huntington’s Families," exploring groundbreaking advancements in predictive testing and reproductive technologies. Link : https://lnkd.in/eBGrv9Dx 💬As one of the Co-authors of this newsletter series, I'd love to hear your thoughts on the importance of community support in health decisions. Share your insights and suggestions if any for future newsletters. A Decision Wrapped in Emotion: The choice to start a family when impacted by Huntington’s disease is not just medical—it's an emotional journey filled with hope and uncertainty. Remember, you’re not alone. Seek support from Huntington’s Victoria, local medical professionals, and genetic counsellors who stand ready to guide you through this complex path. Together, we navigate, make informed decisions, and support one another every step of the way. If you or someone you know is living with Huntington's disease in Victoria, reach out to us at 98186333 or via email at enquiries@huntingtonsvic.org.au. 📬 Subscribe for Monthly Insights: https://lnkd.in/ee97GzAc Let's create a ripple effect of support by reading, forwarding, and sharing this newsletter. Your action might someday make a significant difference for a family in need. 🤝💙 #huntingtonsdisease #geneticsawarness #huntingtonsvictoria #geneticresearch #communityawareness #communitysupport #nonprofit #bluebrigade #victoria

It’s that time of year when we’re looking to lock in our #professionallearning for the remainder of the calendar year. Safe Passage Across Networks (SPAN) is here to help! Download our easily adaptable letter today, submit it for approval and you’ll be on your way to securing your place at this year’s #SPANsymposium23

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