PMG Awareness Organization Inc.

Unlocking the mysteries of PMG (Polymicrogyria)

Resources

Table of Contents

Patient Registries

Research

What about Stem Cell Research?

What is Polymicrogyria?

Recommended Medical Specialists/Clinics/Hospitals/Research

  • Article ranking BEST hospitals for pediatric neurologists and neurosurgery - http://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery
  • Christopher A Walsh Brain Development and Genetics (BrDG) Clinic at Children’s Hospital Boston - https://walshlab.org/
  • Kennedy Krieger Institute - http://www.kennedykrieger.org/ - Located in Baltimore, MD., Kennedy Krieger Institute is an internationally recognized institution dedicated to improving the lives of children and adolescents with pediatric developmental disabilities and disorders of the brain, spinal cord and musculoskeletal system, through patient care, special education, research, and professional training.

State Newborn Screening by State

  • Baby's First Test - https://www.babysfirsttest.org/newborn-screening/states - Each state has it’s own list of newborn screening tests done shortly after birth, typically while you are still in the hospital. These tests are run to look for major (and usually life threatening) diseases and disorders. Screening tests are currently available for more than 60 disorders. However, there is variability in the number and types of conditions found on each state’s newborn screening panel. This link will allow you to see what your state screens for. The blood spots (literally) are put on cards and stored and can be accessed (usually for many years) to run additional tests to see if your child was born with a condition/disease/disorder. Currently, there are a LOT of states that do not test for CMV, a known cause of PMG, but you may be able to have the card retrieved for additional testing. Please see your state’s link for specific information.

Support Groups

Medication Safety

Conditions that MAY be associated with PMG

Definitions

  • Polymicrogyria - A condition characterized by abnormal development of the brain before birth. The surface of the brain normally has many ridges or folds, called gyri. In people with polymicrogyria, the brain develops too many folds, and the folds are unusually small. The name of this condition literally means too many (poly-) small (micro-) folds (-gyria) in the surface of the brain. - https://ghr.nlm.nih.gov/condition/polymicrogyria
  • Unilateral - One side of the brain.
  • Bilateral - Both sides of the brain.
  • Anatomy of the Brain - http://www.aans.org/Patient%20Information/Conditions%20and%20Treatments/Anatomy%20of%20the%20Brain.aspx
  • Frontal Lobes - The frontal lobes are the largest of the four lobes responsible for many different functions. These include motor skills such as voluntary movement, speech, intellectual and behavioral functions. The areas that produce movement in parts of the body are found in the primary motor cortex or precentral gyrus. The prefrontal cortex plays an important part in memory, intelligence, concentration, temper and personality.
  • Occipital Lobes - These lobes are located at the back of the brain and enable humans to receive and process visual information. They influence how humans process colors and shapes. The occipital lobe on the right interprets visual signals from the left visual space, while the left occipital lobe performs the same function for the right visual space.
  • Parietal Lobes - These lobes interpret simultaneously, signals received from other areas of the brain such as vision, hearing, motor, sensory and memory. A person’s memory and the new sensory information received, give meaning to objects.
  • Temporal LobesR - These lobes are located on each side of the brain at about ear level, and can be divided into two parts. One part is on the bottom (ventral) of each hemisphere, and the other part is on the side (lateral) of each hemisphere. An area on the right side is involved in visual memory and helps humans recognize objects and peoples’ faces. An area on the left side is involved in verbal memory and helps humans remember and understand language. The rear of the temporal lobe enables humans to interpret other people’s emotions and reactions.
  • Brainstem - The brainstem is the lower extension of the brain, located in front of the cerebellum and connected to the spinal cord. It consists of three structures: the midbrain, pons and medulla oblongata. It serves as a relay station, passing messages back and forth between various parts of the body and the cerebral cortex. Many simple or primitive functions that are essential for survival are located here.
  • Midbrain - An important center for ocular motion while the pons is involved with coordinating eye and facial movements, facial sensation, hearing and balance.
  • Medulla Oblongata - Controls breathing, blood pressure, heart rhythms and swallowing. Messages from the cortex to the spinal cord and nerves that branch from the spinal cord are sent through the pons and the brainstem. Destruction of these regions of the brain will cause “brain death.” Without these key functions, humans cannot survive.
  • Cerebellum - The cerebellum is located at the back of the brain beneath the occipital lobes. It is separated from the cerebrum by the tentorium (fold of dura). The cerebellum fine tunes motor activity or movement, e.g. the fine movements of fingers as they perform surgery or paint a picture. It helps one maintain posture, sense of balance or equilibrium, by controlling the tone of muscles and the position of limbs. The cerebellum is important in one’s ability to perform rapid and repetitive actions such as playing a video game. In the cerebellum, right-sided abnormalities produce symptoms on the same side of the body.
  • Cerebrum - Forms the major portion of the brain, is divided into two major parts: the right and left cerebral hemispheres. The cerebrum is a term often used to describe the entire brain.
  • Hypothalamus - Handles information that comes from the autonomic nervous system. It plays a role in controlling functions such as eating, sexual behavior and sleeping; and regulates body temperature, emotions, secretion of hormones and movement. The pituitary gland develops from an extension of the hypothalamus downwards and from a second component extending upward from the roof of the mouth.
  • Limbic System - This system is involved in emotions. Included in this system are the hypothalamus, part of the thalamus, amygdala (active in producing aggressive behavior) and hippocampus (plays a role in the ability to remember new information).
  • Pineal Gland - It controls the response to darkness and light. In humans, it has some role in sexual maturation, although the exact function of the pineal gland in humans is unclear.
  • Pituitary Gland - The pituitary is often called the “master gland” because it controls the secretion of hormones. The pituitary is responsible for controlling and coordinating the following:Growth and development, The function of various body organs (i.e. kidneys, breasts and uterus) The function of other glands (i.e. thyroid, gonads, and adrenal glands)
  • Thalamus - Relay station for almost all information that comes and goes to the cortex. It plays a role in pain sensation, attention and alertness. It consists of four parts: the hypothalamus, the epythalamus, the ventral thalamus, and the dorsal thalamus. The basal ganglia are clusters of nerve cells surrounding the thalamus.
  • Aphasia - A communication disorder that results from damage to the parts of the brain that contain language (typically in the left half of the brain). Individuals who experience damage to the right side of the brain may have additional difficulties beyond speech and language issues. Aphasia may causes difficulties in speaking, listening, reading, and writing, but does not affect intelligence. Individuals with aphasia may also have other problems, such as dysarthria, apraxia, or swallowing problems. - http://www.asha.org/public/speech/disorders/Aphasia/
  • Apraxia - A motor speech disorder. The messages from the brain to the mouth are disrupted, and the person cannot move his or her lips or tongue to the right place to say sounds correctly, even though the muscles are not weak. The severity of apraxia depends on the nature of the brain damage.
  • Dyasrthria - A motor speech disorder. It results from impaired movement of the muscles used for speech production, including the lips, tongue, vocal folds, and/or diaphragm. The type and severity of dysarthria depend on which area of the nervous system is affected.
  • Neuronal Migration Disorders - A group of birth defects caused by the abnormal migration of neurons in the developing brain and nervous system. In the developing brain, neurons must migrate from the areas where they are born to the areas where they will settle into their proper neural circuits. Neuronal migration, which occurs as early as the second month of gestation, is controlled by a complex assortment of chemical guides and signals. When these signals are absent or incorrect, neurons do not end up where they belong. - https://www.ninds.nih.gov/health-information/disorders/neuronal-migration-disorders#:~:text=Neuronal%20migration%20disorders%20(NMDs)%20are,they%20will%20remain%20for%20life.

Early Intervention and Educational Rights (This is a FEDERAL RIGHT)

Financial Assistance

  • Medicaid- state based insurance for those with limited income or high cost health care issues - NOTE: Each state’s requirements to meet income restrictions vary. However, there are frequently other programs to assist if your family exceeds the income guidelines. Contact your state’s medicaid office to find out more. Also, some state’s Medicaid programs may have resources for nursing care at home and/or medical daycare for your child/family. Unfortunately, with economical hardships we have to fight for our children now more than ever. - http://medicaiddirectors.org/
  • SSA.gov - http://www.ssa.gov/applyfordisability/child.htm - Application for disability income for your child -please note that if your child is 18, you will need to apply for regular disability for adults.
  • Katie Beckett Waiver - http://www.thefreelibrary.com/The+Katie+Beckett+waiver.-a017209796 - Financial aid for people who do not qualify for Medicaid

Assistive and Adaptive Technology

Disability Rights and Information

  • National Disability Rights Network - http://www.ndrn.org/
  • Americans with Disabilities Act - http://www.ada.gov/
  • ASHA.org - https://www.asha.org/public/speech/disorders/aac/ - Information on Augmentative and Alternative Communication (AAC) devices from the American Speech-Language-Hearing Association.
  • Jeanne A. Carpenter Epilepsy Legal Defense Fund - https://www.epilepsy.com/living-epilepsy/legal-help - People with seizures and epilepsy face discrimination in many aspects of life, including work, school, and community life. If you are a person with epilepsy, family or friend, attorney, or advocate, get legal help and information here at the Jeanne A. Carpenter Epilepsy Legal Defense Fund.