SYNGAP1 Foundation

❝Mercoledì festeggeremo una doppia ricorrenza. L'anniversario di UNIAMO, la Federazione nata 25 anni fa per unire la voce delle Associazioni e far conoscere le #malattierare a partire dai clinici, che al tempo non avevano idea di cosa fossero. Dal 1999 a oggi i traguardi raggiunti sono stati tanti e importanti, a cominciare dallo Screening Neonatale Esteso. Presenteremo poi la decima edizione di #MonitoRare, l'unico rapporto gestito interamente da un'organizzazione di pazienti, uno strumento di advocacy potente, perché andare a vedere con la lente d'ingrandimento se e come qualcosa si muove rappresenta una spinta di sistema❞. Stamattina la Presidente Annalisa Scopinaro su Coffee Break La7, programma condotto da Andrea Pancani, ha potuto tracciare l'evoluzione del sistema malattie rare del nostro Paese e presentare la Convention MonitoRare 2024 (dando qualche piccola anticipazione). Rivivi la puntata 👉 https://lnkd.in/dtp-4cvY Scopri di più 🔍 https://bit.ly/3RIuesd

🎭 My Fascination with Charlie Brown: A Leadership Journey Ever wonder why a seasoned CIO keeps Charlie Brown toys in his office? Here's why: 🔍 The Charlie Brown Connection: • Persistent optimist in the face of challenges • Loyal and focused on building strong relationships • Committed to responsibility and credibility • Lifelong learner always seeking improvement These traits mirror my own leadership philosophy and have been instrumental in my success as CIO. 🚀 How Charlie Brown's Traits Elevate Leadership: 1. Optimism → Opportunity Finder   - See potential where others see obstacles   - Maintain team morale during tough times 2. Loyalty → Trust Builder   - Foster a supportive work culture   - Increase employee retention and satisfaction 3. Responsibility → Accountability Champion   - Lead by example   - Encourage ownership at all levels 4. Continuous Learning → Innovation Driver   - Promote a growth mindset   - Adapt quickly to industry changes 🏆 Practical Leadership Advice: • Embrace setbacks as learning opportunities • Cultivate strong, trusting relationships within your team • Stay committed to your principles, even when challenged • Never stop learning and improving your skills Remember: Leadership isn't just about success; it's about resilience, relationships, and continuous growth. Let Charlie Brown remind you of these essential qualities. 💼 My Leadership Journey: • CIO driving AI, Digital Strategy, and delivering significant business value • Board member: Colorado Technology Association, SYNGAP1 Foundation • Governing Board: Evanta, a Gartner Company, TechYeet, ColoradoCIO • Member: Colorado Space Business Roundtable, National Defense Industrial Association - (NDIA), IEEE, and others. • Advocate for K12 Quantum education in Colorado • IRONMAN finisher (1 x 140.6, 2 x 70.3) • Father of 4 daughters, grandfather of 1, husband of 26 years • Special Needs father • Sensi and Owner of Ohana Martial Arts Academy LLC with my wife • University of Phoenix graduate MS/IS, BS/M Leadership, like life, is a marathon. Stay persistent, optimistic, and true to your values. 💬 Share your thoughts below and let's continue the discussion. ------------------------ If you found this helpful, consider reposting ♻️ and follow Neil D. Morris for more content like this. #LeadershipLessons #CharlieBrown #ExecutiveInsights #AIStrategy #CIOLife #ContinuousLearning #ResilienceInLeadership

Today is international #SYNGAP1 Awareness Day 💜 SYNGAP1 related non-syndromic intellectual disability is a rare genetic condition caused by genetic variants in the SYNGAP1 gene. The associated symptoms vary between individuals but may include: intellectual disability, #epilepsy, speech delay, autism, as well as sleep and behavioral disorders ‼️ Syngapians love water! Join the #Splash4Syngap campain & help them raising awareness 💜 Learn more about #SYNGAP1 at SyngapResearchFund.org ‼️ SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders SYNGAP Elternhilfe e.V. SYNGAP1 Foundation Syngap1 Argentina Syngap España Lorenz Kiwull J. Michael Graglia Peter Halliburton

Hanging in the Halls of the FDA and National Institutes of Health are part of the SYNGAP1 Legacy! Forever and Always the beginning of SYNGAP1 as we know it today! For SYNGAP1 Awareness Month SYNGAP1 Foundation honored my son Beckett. He was the 6th patient diagnosed in the world in 2012. He was the inspiration for starting our organization, the first research organization in the world with the mission to drive research to treatments. We want to thank Beyond the Diagnosis for choosing Beckett to represent the #SYNGAP1 community. Read about Beckett’s story here and see the beautiful portrait by Ian Mohon. https://lnkd.in/ekGNv4e