UCLA Health’s Post

Celebrating Extraordinary Dads! Another reason, I love doing what I am doing in the space of Diversity, Equity and Inclusion - the people I get to meet! I am profoundly moved to share the inspiring story of Barry Mone, an exceptional father who exemplifies unwavering love and resilience in the face of adversity. His journey as a pillar of strength for his son - Charlie, who battles Duchenne Muscular Dystrophy (DMD), is a testament to the power of love, compassion, and determination. I met Barry through LinkedIn and we further connected over his endless efforts to raise awareness about DMD. In the face of the challenges that come with DMD, Barry and his family have not only become a tireless advocate for raising awareness about this rare genetic disorder but has also demonstrated unparalleled commitment to ensuring Charlie lives life to the fullest. From attending medical appointments to exploring innovative treatments and therapies, Barry has become a beacon of hope for families navigating similar paths. His dedication goes beyond the medical realm. Barry actively fosters a supportive community, sharing insights, resources, and emotional support with other parents facing similar challenges. Through his advocacy efforts, he shines a light on the importance of research and the urgent need for advancements in the treatment of DMD through his non-for profit Charlies Hope. Read more about Charlies Story below. It’s no wonder Charlie is continuing to smile and soldier on through adversity – he has his fathers strength and motivation supporting him through. https://lnkd.in/dt36Qe9p Let's take a moment to salute Barry. Your story is a source of inspiration, reminding us of the profound impact that love and advocacy can have on the lives of those affected by rare diseases. Your strength is changing the narrative for families affected by Duchenne Muscular Dystrophy. #DuchenneAwareness #InspiringDads #UnyieldingLove #RareDiseaseAdvocacy

In 2003, after what initially begun as Prematurity Awareness Day, we realized with all the activities focused on prematurity—rallies, vigils, news stories, events, public lightings, and even the release of our Report Card—one day was simply not enough. Prematurity Awareness Month was born, and the day became World Prematurity Day. Although we’ve advanced many research, programs and advocacy initiatives to fight preterm birth, throughout these last two decades, 1 in 10 babies is born preterm each year in the U.S. Prematurity continues to affect too many families and is fueled significantly by disparities in our healthcare system, communities, and institutions. Learn more at https://lnkd.in/e_TPu4Gb.

Prematurity is one of the leading causes of #infantloss #infantmortality. TheMourningProject.com supports MARCHOFDIMES in raising awareness and addressing preventable #prematurity and ending the disparities in the healthcare system. #20000BabyBooties #BlanketChange #UnitedAgainstInfantMortality

For those APPs in my network, this is a great topic that I think a lot of people will be interested in. You'll get CME/CEU credits as well. 💻🩺 #APP #AdvancedPracticeProvider #CME #CEU #Healthcare #Webinar #VirtualConference

For those who may not be aware, my son Macario was born last year with a diagnosis of Trisomy 21, commonly known as Down syndrome. Since receiving this diagnosis, we've been exploring ways to uplift this incredible community. One of the most impactful actions you can take is to support our team, 'Mac and Cheese', at the Buddy Walk. Why I Walk: The CHOP Buddy Walk® is the sole fundraiser for the Trisomy 21 Program: CHOP’s Trisomy 21 Program, which cares for more than 1,200 children and 300 adults annually, would not exist as it does today without the tremendous support of the CHOP Buddy Walk® & Family Fun Day. The CHOP Buddy Walk® provides hope for tomorrow for children with trisomy 21, also known as Down syndrome, the most frequently occurring genetic syndrome in the United States. One in every 800 children are born with Down syndrome, and they often face an uncertain future. These children are at greater risk of developing chronic and life-threatening conditions such as heart disease, bone deformities, neurological, gastrointestinal and endocrine disorders, as well as feeding and developmental disabilities. How Can You Help? By donating and helping me support: •   Ongoing clinical care and coordination for children and adults with Down syndrome and their families •   New assessment tools to identify potential issues and intervene early •   Continuing education for families, medical providers and community members •   Transformational research to improve the quality — and quantity — of life for individuals with Down syndrome •   With your support, babies born with Down syndrome can experience the many joys of childhood — and flourish in adulthood. Whether you're in Philly or far away, there's a spot just for you! So, put on your walking shoes, or simply click to support. For my son Macario, for every child, and for a future filled with understanding, love, and boundless possibilities. Join My Team https://lnkd.in/eaF7XDWb Donate to my Team https://lnkd.in/eGxsxDDG Donate through Facebook https://lnkd.in/eaU7XYeE Event Details https://lnkd.in/eRUV9eUH See you there– in spirit or stride! P.S. Don’t forget to share this with friends and family. The more, the merrier!

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

🌟 LeAnn's Legacy: Supporting Those Battling Cancer 🌟 When someone you love receives a cancer diagnosis, it's natural to want to help. But sometimes, knowing how to support them can feel overwhelming. At LeAnn's Legacy, we understand the importance of tangible acts of kindness during this challenging time. Here are some ways you can make a difference: 🍲 Deliver meals: Organize meal deliveries or take care of grocery shopping to ensure your loved one has nourishing food during their recovery. 🏡 Help with household tasks: Assist with chores like cleaning, laundry, and childcare to ease the burden on the patient and their family. 🚗 Drive to appointments: Offer to drive the patient to and from medical appointments, providing comfort and companionship along the way. 💖 Provide emotional support: Be there to listen, offer a shoulder to cry on, or simply sit quietly with your loved one during difficult moments. 💐 Send thoughtful gifts: Surprise them with self-care items, activity books, or small gestures that show you're thinking of them. 🙏 Offer prayers: Many patients find solace in knowing they're being prayed for and supported spiritually. 🌻 Plant a garden: Create a therapeutic outdoor space where patients can find peace and joy amidst their treatment journey. Remember, every act of love and support makes a difference. Together, let's support each other with love and compassion. 🫂🤝 #LeAnnsLegacy #CancerSupport #TogetherWeHeal

Did you know that May is NEC Awareness Month? In 2014, the Canvasser family founded the NEC Society after their son Micah tragically died from complications of the disease just before his 1st birthday. They chose May as #NECAwarenessMonth because of the importance of partnering with and elevating mothers to build a world without this devastating disease. Mothers are accelerating NEC research, education and advocacy while providing the most protective therapy against #NEC - their milk. The NEC Society's motto, "from pain to power", recognizes the profound heartache and trauma following a NEC diagnosis. While we cannot lessen or erase this pain, together we can harness the power of our heartache and channel our anguish to help other families while supporting The NEC Society's mission. Learn more below as we work to build a world without this devastating disease: #preventNEC #NECawareness #healthcareprofessionals

🧔🎗️ Movember: Men's Health Awareness 🌟 November marks Movember, a month dedicated to raising awareness for men's health issues and promoting conversations about physical and mental well-being. At Volunteer Success, we recognize the importance of supporting men's health and encouraging proactive measures for a healthier future. During this month, let's come together to support men's health initiatives. Here are some ways you can make a difference: 1️⃣ Volunteer for organizations that focus on men's health education, offering resources and promoting regular check-ups. 2️⃣ Engage in conversations about men's mental health, fostering open dialogue and reducing the stigma surrounding seeking help. 3️⃣ Participate in fundraising campaigns to support research and programs addressing prostate cancer, testicular cancer, mental health, and suicide prevention. 4️⃣ Volunteer at men's health clinics or health fairs, providing support and information to individuals seeking assistance. 5️⃣ Advocate for gender-specific health policies that address the unique needs and challenges faced by men.