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Diffuse intrinsic pontine glioma (DIPG) is a brain tumor found in a part of the brain stem—above the back of the neck and connected to the spine—called the pons. The pons is a vital part of the brain, controlling critical bodily functions like breathing, swallowing, blood pressure, heart rate, eyesight and balance. DIPG occurs almost exclusively in children; most often between the ages of four and 11. DIPG accounts for roughly 10-15% of all brain tumors in children. These tumors—called gliomas because they grow from glial cells—permeate healthy brain tissue and cause severe symptoms. DIPG is classified into four stages, with Grade III and IV being the most aggressive. DIPG SIGNS AND SYMPTOMS Children with DIPG typically experience double vision, loss of balance and clumsiness, weakness in the arm and legs, nausea and vomiting, headaches (especially in the morning) and difficulty with...
Rhabdomyosarcoma (RMS) is a type of soft tissue cancer that most commonly affects children and adolescents. It’s often found in skeletal muscle tissue or organs, such as the head and neck area, the urinary system, the reproductive system or appendages like the arms and legs. Rhabdomyosarcoma is part of a larger grouping of cancers called sarcomas which emerge in the body’s connective tissues, like muscles, fat, bones, blood vessels and joints. There are 50 different types of sarcomas. There are only two main types of rhabdomyosarcoma: embryonal rhabdomyosarcoma (ERMS) and alveolar rhabdomyosarcoma (ARMS). Embryonal rhabdomyosarcoma generally occurs in children under the age of 10. It is the most common type of rhabdomyosarcoma and is typically found in the head, neck, urinary tract or reproductive organs. Alveolar rhabdomyosarcoma is more common in adolescents and young adults, and it...
Medulloblastoma is a type of brain cancer that’s most commonly found in children. “Medulloblastoma starts in the cerebellum, which is located in the back of the brain,” explained Rally-funded Researcher Dr. Jezabel Rodriguez-Blanco, Assistant Professor, Department of Pediatrics at the Medical University of South Carolina. “It is a fast-growing tumor that often compresses the ventricle that brings the protective cerebrospinal fluid to the brain. The cerebellum is the part of the brain that controls balance, coordination, speech and other motor functions. Medulloblastoma can spread through the fluid that surrounds your brain, called cerebrospinal fluid (CSF), and affect the areas around the brain and spinal cord. Rarely does it spread to other parts of the body. “Medulloblastoma has been one of the most molecularly interrogated pediatric tumors,” said Rally-funded Researcher Dr. Vidya...
During this pandemic, my mantra has been “adjust and readjust.” I have shared that I learned this from the Rally families who never cease to amaze me with how often and quickly they adjust and readjust. Today, I stand in awe of 17-year-old Rally Kid Amanda and how she has adjusted and readjusted. Less than a year ago, she was diagnosed with osteosarcoma, a type of bone cancer. She was a junior in high school at the time. Amanda has endured so much: a horrific, intense and painful treatment protocol that has not gone smoothly, surgery to remove part of her leg and replace it with a titanium rod, a full knee replacement and the loss of her hair. Amanda met two other teenage girls, Ellie and Catherine, who were also fighting the osteosarcoma beast. They become the “Osteo Trio”—supporting each other and becoming great friends. A couple months ago, the Osteo Trio lost one of their own,...
Hi everyone! My name is Amanda. I am 17 years old and a rising senior in high school. I am a Rally Kid, as well as the founder of The Osteosarcoma Society. I was diagnosed with osteosarcoma, a form of bone cancer, in my right femur on December 3, 2019 after two months of complaining of knee pains. I need your help. But first, I want to share my story. I had gone to my parents multiple times to inform them of my discomfort. They assumed it was due to lack of activity and I just needed to exercise more. However, that made no difference, and over time, my knee began to swell up more and more each day. After spending Thanksgiving in Miami with my extended family, we returned to Atlanta and I begged my mom to take me to a doctor. We went to get an x-ray and the results presented a large mass eating away at my bone. Worried sick, my mom scheduled an MRI for the following day. My family was...
“Glioma” is a general term for a group of tumors that begin in glial cells—the supporting cells of the brain. Gliomas are classified based on their location and by the type of glial cell—astrocytes, oligodendrocytes or ependymocytes—from which they arise. Thus, many different types of brain tumors are classified as gliomas, like astrocytomas, oligodendrogliomas, ependymomas, brain stem gliomas and glioblastomas. About half of all pediatric brain and spinal cord tumors are gliomas. Gliomas are the most common group of brain tumors in both children and adults. “There are studies that definitely show that while pediatric high-grade gliomas share certain features with adult gliomas, they are also biologically distinct from adult high-grade gliomas,” said Rally-funded Researcher Renee Read, Ph.D., Assistant Professor, Department of Pharmacology and Chemical Biology and Department of...
Diffuse intrinsic pontine glioma (DIPG) is a brain tumor found in a part of the brain stem—above the back of the neck and connected to the spine—called the pons. The pons is a vital part of the brain, controlling critical bodily functions like breathing, swallowing, blood pressure, heart rate, eyesight and balance. DIPG occurs almost exclusively in children; most often between the ages of four and 11. DIPG accounts for roughly 10-15% of all brain tumors in children. These tumors—called gliomas...
Rhabdomyosarcoma (RMS) is a type of soft tissue cancer that most commonly affects children and adolescents. It’s often found in skeletal muscle tissue or organs, such as the head and neck area, the urinary system, the reproductive system or appendages like the arms and legs. Rhabdomyosarcoma is part of a larger grouping of cancers called sarcomas which emerge in the body’s connective tissues, like muscles, fat, bones, blood vessels and joints. There are 50 different types of sarcomas. There...
Medulloblastoma is a type of brain cancer that’s most commonly found in children. “Medulloblastoma starts in the cerebellum, which is located in the back of the brain,” explained Rally-funded Researcher Dr. Jezabel Rodriguez-Blanco, Assistant Professor, Department of Pediatrics at the Medical University of South Carolina. “It is a fast-growing tumor that often compresses the ventricle that brings the protective cerebrospinal fluid to the brain. The cerebellum is the part of the brain that...
During this pandemic, my mantra has been “adjust and readjust.” I have shared that I learned this from the Rally families who never cease to amaze me with how often and quickly they adjust and readjust. Today, I stand in awe of 17-year-old Rally Kid Amanda and how she has adjusted and readjusted. Less than a year ago, she was diagnosed with osteosarcoma, a type of bone cancer. She was a junior in high school at the time. Amanda has endured so much: a horrific, intense and painful treatment...
Hi everyone! My name is Amanda. I am 17 years old and a rising senior in high school. I am a Rally Kid, as well as the founder of The Osteosarcoma Society. I was diagnosed with osteosarcoma, a form of bone cancer, in my right femur on December 3, 2019 after two months of complaining of knee pains. I need your help. But first, I want to share my story. I had gone to my parents multiple times to inform them of my discomfort. They assumed it was due to lack of activity and I just needed to...
“Glioma” is a general term for a group of tumors that begin in glial cells—the supporting cells of the brain. Gliomas are classified based on their location and by the type of glial cell—astrocytes, oligodendrocytes or ependymocytes—from which they arise. Thus, many different types of brain tumors are classified as gliomas, like astrocytomas, oligodendrogliomas, ependymomas, brain stem gliomas and glioblastomas. About half of all pediatric brain and spinal cord tumors are gliomas. Gliomas are...