Welcoem to posts!!
in the future - u will be able to do some more stuff here,,,!! like pat catgirl- i mean um yeah... for now u can only see others's posts :c
“Without Dr. Comi and the Kennedy Kennedy Krieger Institute, we would have been lost and not sure which direction to go next when dealing with Maison's rare disease,” Tammi, Maison’s mom said. In 2013 Dr. Anne Comi and her team at Kennedy Krieger discovered the gene that causes the rare disease, Sturge-Weber Syndrome that impacts children like Masion. With help the therapies at Kennedy Krieger, Maison has celebrated many milestones in the past 12 years. In second grade, he mastered using scissors. He entered the 5th grade on a second-grade level. However, he finished the year reading on fifth-grade level. He learned to ride a bike at the age of 10. He learned to tie his shoes at age 12.
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Let’s get ready to ski! Patients from our International Center of Spinal Cord Injury get fitted for skiing and learning how to use their equipment before hitting the slopes of Crested Butte, Colo. with the Adaptive Sports Center.
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Sometimes a #raredisease diagnosis means looking outside your own network - and even country - to find specialists who can help you. For one 7-year old, Marco, his family found that no doctors in New Zealand, where the family lives, had any clinical experience with his condition due to its extreme rarity. Research on the internet about the leukoencephalopathy diagnosis led them to discover Kennedy Krieger.
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What would you do if you had the opportunity to work side-by-side with your hero as their intern? Shannon Kafura, who was born with Osteogenesis Imperfecta Type 4 (OI), doesn’t have to wonder anymore. This summer, she will intern with the doctor that changed her life, Dr. Jain. As an intern, Shannon hopes to meet new patients, discover the treatments available to people with brittle bone disease, and learn more about Dr. Jain’s genetic mutations research. “My goal for this internship is simple," Shannon said. “I want to get [hands-on] medical experience to ensure that I can attend the medical school of my choice. I admire Dr. Jain’s intelligence as a doctor and the way he interacts with patients. I seek to emulate him."
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Sturge-Weber syndrome (SWS) is a #raredisease that can cause #seizures, #paralysis, #strokes, #migraines, learning problems, vision loss, and other health issues. The groundbreaking identification of the gene that causes #SturgeWeberSyndrome - a #geneticmutation and #raredisease that occurs before birth - was discovered at Kennedy Krieger in 2013. #SWS does NOT generally run in families and it can affect one side (in about 85 percent) or both sides of the body (in about 15 percent). This month we're raising awareness about rare diseases like Sturge Weber for #RareDiseaseDay.
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Have you ever heard of Barth Syndrome? It’s an X-linked genetic disorder that usually affects males. There are only 88 known cases in the world. Maurita Graves found out that her son, Quentin, had this rare disease when he was only three months old. In the last six years, the Institute team has created a unique therapy plan for her son and helped Maurita connect with other families impacted by Barth Syndrome. In fall 2018, Maurita’s seven-year-old son surprised her with his progress. "Quentin was working with his physical therapist, Brittany, and mastered most of the challenges she gave him to complete," Maurita said. “It was a vast improvement from his previous session.”
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The overall survival rate for #pediatriccancer is now 83%, but more than 75% of children who undergo the cancer treatments will experience some level of cognitive impact making school after cancer a challenge. Lisa Carey, assistant director at Kennedy Krieger's Center for Innovation and Leadership in Special Education provides teachers with a guide to support childhood cancer survivors: www.kennedykrieger.org/stories/digital-resource-ro…
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Anabelle, now 12, was only a year old when she had her first seizure. Tests soon showed Anabelle had #SturgeWeberSyndrome (SWS). Anabelle's case led Dr. Anne Comi to conduct a clinical trial to determine how #cannabidiol (an isolated chemical from #medicalcannabis) might help treat seizures in patients with #SWS. The #clinicaltrial was funded by Anabelle's parents to help kids like Anabelle living with SWS.
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Did you know our International Center for Spinal Cord Injury offers trips throughout the year for our patients to participate in adaptive sports? Some of our patients spent last month in Colorado learning to ski. Eric Joshua Banania, who benefits from outpatient therapy at Kennedy Krieger’s International Center for Spinal Cord Injury, was excited to participate for the second consecutive year. “I decided to go on this trip because adaptive skiing is one of the adaptive sports that I fell in love with," Eric said. “Colorado is one of the best spots to go skiing in the US. My biggest goal was being able to ski more independently. I was able to catch and correct myself before falling over or stopping.”
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At Kennedy Krieger, we are dedicated to improving the lives of children and adolescents with disorders and injuries of the brain, spinal cord, and musculoskeletal system. Through groundbreaking research, innovative treatments, and life-changing education, our successes are your successes. Even more #research opportunities, #community engagement, extraordinary #patientcare, and leading #education programs are coming in 2019. Learn more about Kennedy Krieger by visiting www.kennedykrieger.org/.
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Learn more about Kennedy Krieger Institute, an internationally recognized institution dedicated to improving the lives of individuals with developmental disorders and injuries through patient care, research, professional training, special education, and community initiatives.