Lucile Packard Foundation for Children's Health

It’s 11/22, so we’re thinking about our 22q11 families. Up to one in every 2,000 babies is born with 22q11.2 Deletion Syndrome (also known as DiGeorge syndrome), a rare genetic disorder caused by the loss of a small piece of the 22nd chromosome. Though the condition is lesser known, 22q11.2DS has one of the highest prevalences of developmental delay and major congenital heart disease—second only to Down syndrome. Here are just a few of the challenges children with 22q11.2DS may face: ?? Heart defects ?? Cleft palate ?? Weakened immune system ?? Learning difficulties, autism, anxiety, and other behavioral conditions The good news? Early diagnosis and comprehensive care from a multi-disciplinary team can help kids with 22q thrive. And cutting-edge research at institutions like Stanford Children's Health | Lucile Packard Children's Hospital Stanford is unraveling how 22q11.2DS affects the brain and immune system—offering hope for better treatments in the future. ?? Read more here: https://lnkd.in/g5hvC85n #22qawarenessmonth24

??Meet Dr.?Yasser?El-Sayed, obstetrician-in-chief at Stanford Children's Health | Lucile Packard Children's Hospital Stanford and a global leader in maternal and fetal?medicine. With over 30 years of experience, Dr. El-Sayed and his team are transforming care for high-risk pregnancies through complex maternal care and groundbreaking treatments like in-utero surgery for spina bifida and cystic fibrosis. ? “I chose to spend my entire career [at Packard Children’s] because I wanted to provide the highest level of care at a place that helps families in our community, regardless of their ability to pay,” El-Sayed says. “There are not many places in the country or in the world that do this.” ? Dr.?Yasser?El-Sayed grew up in a region of the world where access to safe childbirth was much more limited than in the United States. These memories inspired him to become a doctor. ? Today, his work is fueled by philanthropy, which allows his team to drive research to develop new treatments, tackle health inequities, and provide top-tier care for every family in our community.??? ? Learn more about how Dr. El-Sayed and his team are delivering the best care to every mother and child at Packard Children’s at?LPFCH.org. #PrematurityAwarenessMonth

??♀?? Meet Sufi Hariri, Ambassador Board Member for Ambassadors for Lucile Packard Children's Hospital Stanford. ? ?? Since its inception in 2005, membership has grown to over 200 members, consistently raising over $220,000 for a special hospital project each year.? ? ?? Sufi felt compelled to become more involved with the hospital after her youngest daughter received exceptional care.? ? ?? Learn how to become an ambassador and support this year’s Fund-A-Need: The Stanford Medicine Teen Van!?

???Meet Austen, a NICU graduate and heart patient. Born at just 30 weeks, weighing 2.6 lbs, Austen’s journey began with a premature birth and the discovery of a?tracheoesophageal fistula?and a complex heart condition, Tetralogy of Fallot. It was a whirlwind of surgeries and treatments, but through it all, the Stanford Children's Health | Lucile Packard Children's Hospital Stanford care team surrounded?Austen and her parents?with love, expertise, and compassion.? ? Did you know? 1 in 10 babies in the U.S. is born prematurely, facing increased?health?risks and?the potential for lifelong?challenges. At Lucile Packard Children’s Hospital Stanford, we’re leading the way in neonatal research, providing cutting-edge treatments and life-saving care for our smallest patients. ? ??Join us this World Prematurity Day in celebrating?Austen and her family’s resilience?and supporting the groundbreaking work being done at Stanford to give every baby the best possible start. Learn more at LPFCH.org ? #WorldPrematurityDay #PrematurityAwarenessMonth

???Meet Dr. Dessi P. Zaharieva, PhD, CEP, CDCES: Diabetes Researcher, Athlete, Advocate??? ???Diagnosed with Type 1 Diabetes (T1D) at age 7. ???Competed in the 2013 Taekwondo World Championships, winning bronze for Team Canada???. ???Now, a researcher at Stanford University School of Medicine, helping kids with T1D stay active safely. ???Her research focuses on using the latest technology to make diabetes management easier for families. ? ??Managing blood sugar is tough, but Stanford experts like Dr. Zaharieva are using cutting-edge tools and a team-based approach to give all kids with T1D access to better care! Read more here: https://lnkd.in/gbGkF4RN ? #DiabetesAwarenessMonth #WorldDiabetesDay

?? Breaking news! Michelle Monje, MD, PhD, the Milan Gambhir Professor of Pediatric Neuro-Oncology, and Crystal Mackall, MD, the Ernest and Amelia Gallo Family Professor and professor of pediatrics and of medicine at Stanford University School of Medicine, have made a pivotal breakthrough in pediatric brain tumor research! ? ?? Thanks to a decade of donor support, a study led by Drs. Monje and Mackall using an immune-cell therapy resulted in one clinical trial participant, Drew, having a complete response: his tumor disappeared entirely from brain scans. ? ?? Diffuse intrinsic pontine glioma (DIPG), a devastating brain tumor, has a median survival of less than one year following diagnosis and can result in pain, paralysis, or loss of ability to walk. This research shows huge potential to change the course for children.?? ? ?? “These results—which make me more hopeful about a cure than I have ever been—owe so much to philanthropy and the families and foundations that have put their faith in our research,” says Dr. Monje. Read the full story linked below. https://lnkd.in/g6DNjykD

???Meet our colleague Devon N., the assistant director of community fundraising at the Lucile Packard Foundation for Children’s Health. ??Devon has been at the Foundation for over a year and supports two of our largest community programs: Summer Scamper and the Employee Giving Campaign! ??Fun fact: Devon lived in Japan for 5 years and is now learning how to speak Japanese. ???Watch this episode of Faces of the Foundation to learn more about the impact of Devon’s work. ??Thank you, Devon, for supporting our mission!

"Families need to be viewed as colleagues in not only their child's care, but in policy and program development, implementation, and evaluation. A core foundation of family-centered care." This insight was shared at the first café in “The Future of Care for Children with Medical Complexity Virtual Café Series” led by the Center for Innovation in Social Work & Health at BU School of Social Work. Café #1: “Where We Are Now and Where We Need to Go” provided an overview of key topics, frameworks, and emerging trends to advance the quality of life and well-being of children with medical complexity and their families. The insights, family-driven priorities, and actionable ideas from this rich discussion between family leaders and health care professionals were captured in 3 products: 1.??????? ???????????????? ?????????????????? 2.????????? ??????????????????????? 3.??????? ?????????????? ?????????????? (featured below) Visit our resource page for Café #1 to explore these products and view the café recording. This work was supported by the Lucile Packard Foundation for Children's Health. https://lnkd.in/gSATfYQP

?? Trick or Treat! ?? We had a spooktacular time at our Halloween party here at the Foundation. Our colleagues brought their little ones, and we rocked amazing costumes, got crafty, and tested our spooky smarts with some trivia. ?Huge shoutout to our Spirit Squad ERG for planning this wickedly fun event. Wishing you a Happy Halloween from the whole team! ?????

???Gift planning is like planting a tree that enriches our environment and provides shade for years to come. Start by gathering your important documents, listing what you own, and thinking about the causes or people you want to support.??? This week, Estate Planning Awareness Week, is the perfect time to take your first steps toward leaving a lasting impact!???? ? Learn more at the link below. https://lnkd.in/gFd6Rp4V ? #estateplanningawarenessweek?