Mary Bridge Children's Hospital’s Post

A new research study is using AI to improve life after stroke for stroke survivors! It's #BrainAwarenessWeek 🧠 and as part of the Stroke Alliance For Europe (SAFE) we're helping raise awareness of the importance of research in stroke. Today we are highlighting a new project called TRUSTroke TRUSTroke researchers are developing an advanced technology to help healthcare professionals, patients, and caregivers manage both short- and long-term effects of an ischemic stroke. Research is vital to enable more people than ever to survive stroke with better outcomes. Your donations have allowed us to give nearly half a million pounds to research to tackle these conditions. 👉 Read more about some of the stroke research we fund on our website at https://lnkd.in/eSdaRbAx

👀 What an eye-opening experience! 🩺After attending the webinar about Diagnosis Of Rare Diseases, by RD-Portugal with The Ordem dos Farmacêuticos, I had the privilege of meeting Ana Rita Moreira and Luis Miguel Oliveira. Dani's parents, a really cute boy who has, unfortunately, been diagnosed with a rare disease caused by a v-ATPase genetic disorder, which causes developmental and epileptic encephalopathy. A condition that has no known treatment, and is very limiting for children. 👫 As strong-fighter parents who couldn't consent to the lack of knowledge and medical support for their child, they founded the v-ATPase Alliance Association, uniting families affected by v-ATPase genetic disorders, and promoting treatment research and development. 🔬 It is with great honor and enthusiasm that I have become part of this research group, aiding in the search for a treatment discovery! In collaboration with RARE-X, we are starting to build an innovative Data Collection Program 📚 that will allow us to advance research , therapy, and drug development. 💊 🙍♀️ This is a really debilitating condition, where children and their families face enormous daily challenges. If you want to help this mission feel free to share this program or give a kind donation. 🤲🏼 https://lnkd.in/dmjT2QZX 🧬 v-ATPase Alliance: https://lnkd.in/dbDMUvZe

This story is one of great love and great loss. It is also the story of two Mikes and Sudden Cardiac Arrest. The legacy of one Michael and the survival of another Michael. This month's non-profit spotlight features the story of just1mike. Read on to learn the story of this incredible organization and how you can help save more lives from Sudden Cardiac Arrest. https://hubs.li/Q02p-8_T0

Given that the uvea comprises the choroid, ciliary body and iris as per some definitions, maybe attention needs to be placed on the fibrous layer of the retina. Bruch’s membrane which is fibromuscular is negatively charged. By injecting positively charged VEGF and FGF capsules through target microscopic brachytherapy we can correct: 1. Uveitis - release microscopic prednisone with the capsules 2. Macular degeneration - supplying adjacent GF 3. Diabetic proliferation retinopathy - targeted areas of these two compounds - anti in others 4. Preclude retinal detachment by obviating all of above 5. Unblock canal of Schlemm by releasing synthetic lysozyme from Bruch via diffusion and capillaries RCH is clinically the strongest hospital overall including adult hospitals. It’s where I studied paediatrics as a medical student and is no doubt the forerunner worldwide in clinical guidelines. Your biggest fan! Arjun

🚵♂️ Meet one of our returning riders: Terri Gelberg! Terri shared with us why she rides for Team CHIbra: "I am proud to ride with Team CHIbra once again, recognizing the vital importance of supporting research for hyperinsulinism. This ride is especially meaningful for me to ride alongside, and honor, Dr. Charles Stanley. Dr. Stanley's groundbreaking work significantly advanced the understanding and treatment of hyperinsulinism during his career. By supporting this cause, we continue to build on his pioneering efforts, honor his legacy, and make a difference!" You can support Terri's fundraiser for HI research at https://lnkd.in/eXEiFPGa 🚲️ The Million Dollar Bike Ride is tomorrow, June 8 in Philadelphia, PA, and for the 11th year, we are raising funds for congenital hyperinsulinism research! ‼️ 💙 Your donations to CHI this month will go even further - The University of Pennsylvania will match the first $30,000 of our donations. CHI is raising funds to address the critical need for research for diagnostic tests to increase timely diagnosis of HI, tools for better management, new treatments, and, one day, a cure. #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Today is World Neurofibromatosis (NF) Awareness Day. As many of you know, our family has battled with NF over many years. This month, I have taken on the challenge to walk 3400kms with the Barney Army this month and raise $15k! NF is a complex, unpredictable and progressive genetic condition that causes tumours to form on nerves, under the skin, and deep in the body. But importantly, it can affect anyone regardless of gender, ethnicity, or family history.  Highly variable, around 1 in 5 children with NF1 will develop a brain tumour; 1 in 4 will develop chronic pain, spinal tumours are seen in 60-80% of NF2 patients, and on average, the lives of those living with NF1 will be reduced by 10-15 years compared to the average population. TODAY is World NF Awareness Day and today all donations will be DOUBLED.    Thanks for reading and your support!   https://lnkd.in/g4uHRQnu   #conquernf

As we approach NF2 Awareness Day on May 22, it’s heartwarming to see the efforts to raise awareness and support research for this condition. Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. Today we meet Hermienke she explains to us how her childhood seemed very abnormal with a diagnosis so young, but she is a great fighter to our cause, raising awareness matters dearly to her and she is a fabulous advocate. “ I had my first MRI when I was 12. At 13 my first vestibular schwannoma was radiated, and at 18 the other, along with radiation to a tumour on my brainstem and two surgeries to remove a tumour from my lumbar spine. I have a radiated tumour on my trigeminal nerve and last year I had four surgeries relating to vocal cord paralysis. I spent two weeks barely breathing through a hole in my neck and it was one of the worst experiences of my life. NF2, is a lifelong genetic condition, that weaves itself into the fabric of existence, unyielding and unrelenting. There is no middle or ending to any of our stories. Surgery, radiosurgery, and chemotherapy—are the only options we have. Yet, they come at a cost. Their impact reverberates through the delicate pathways of nerves, often leaving behind scars of lost function. NF2 is for life, an unwavering companion. There is no cure, no magic wand to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure

#DidYouKnow... ... every three minutes, a child is born with a cleft lip and/or cleft palate? Annually, that is an estimated 175,200 children worldwide. Infants born with cleft conditions have nine times the risk of dying within the first year of life. But you can offer them hope. With surgery, a child can have a brand-new, beautiful smile in as little as 45 minutes. #OperationSmile exists to make sure everyone gets the safe corrective surgery they need wherever they live in the world. It is surgery that changes a child’s life forever… and it changes families, communities, countries and yes, the world. In high-income countries like Canada, surgery to fix cleft conditions is common and is usually done before a child is 18 months old. In low and middle-income countries, it can take years to receive treatment. Only 6.3% of an estimated 312.9 million surgical procedures performed each year go to the poorest third of the global population. Here's what you can do to make a difference: join #Technorama2024's fundraiser in support of Operation Smile Canada by donating silent auction and contest prizes. For details, please contact us at info@diac.ca. Thank you! #ThankfulThursday #PrizeDonation #Call2Action

Ascending Ben Nevis Barefoot: A Journey of Hope and Healing On June 21st, 2024, I am embarking on a soul-stirring expedition up Ben Nevis, not just with my feet, but with my heart wide open. With every barefoot step, I am climbing for Samuel's Promise, a beacon of light in the fight against low-grade brain tumors. Samuel's Promise isn't just about funding research; it's about igniting hope. It's about standing tall in the face of adversity and saying, "We will not be defeated." Together, we're raising funds for vital research into low-grade brain tumors and pioneering surgical advancements. Each step up this majestic mountain is a testament to the strength of the human spirit, a tribute to the resilience of those battling brain tumors, and a vow to never give up the fight. It's a journey marked by tears, laughter, and unwavering determination. But I can't do it alone. I need you, your support, your encouragement, and your unwavering belief that together, we can make a difference. Together, we can fund research that saves lives. Together, we can climb to new heights of possibility. Join me on this emotional and impactful journey as we climb Ben Nevis barefoot for Samuel's Promise. Let's turn every step into a symbol of hope, every heartbeat into a beacon of courage, and every summit into a triumph of the human spirit. Together, we will change lives. Together, we will conquer mountains. Donations can be made on the link below: https://lnkd.in/eBKmtG8h 💙🏔️ #ClimbForACause #SamuelsPromise #BenNevisBarefoot #HopeInEveryStep

you received official training on Effective Communication? Have you received official training on Breaking Bad News? The majority of practitioner's would probably say No. You might be surprised to know that one of the biggest areas for FTP cases brought against GOC Registrants is communication or lack of communication. Thank you to Michelle Lloyd-Bibb F.B.D.O for the kind invitation to present this core competency. One Interactive point for Optoms, CLOs and DOs.