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January

February

Disability Awareness: Turner Syndrome Awareness Month

Date: February 1- February 28

Color/Symbol: Purple Butterfly Ribbon

What is Turner Syndrome?

It is a rare disease that occurs in between one and 2,000 birth only affecting females. Turner Syndrome has several names including Ullrich-Turner Syndrome, Bonnevie-Ullrich-Turner Syndrome. gonadal dysgenesis and 45X. This rare disease is the result of the absence of one set of genes from the short arm of one X chromosome. The syndrome was first described by American endocrinologist Henry Turner in 1938.

Characteristics of Turner syndrome include facial and physical appearance, cognitive characteristics, clinical issues and mental healthy symptoms. No two people with Turner syndrome are exactly the same therefore, not everyone will display the same characteristics:

Facial Appearance

• down-turning eyelids
• low-set and prominent ears
• small jaw
• high narrow roof of mouth
• neck webbing

Physical Appearance

• broad chest with widely spaced nipples
• narrow fingernails and toenails
• hand and feet swelling
• short fingers
• smaller than average height
• skin moles

Medical Issues

• chronic middle ear infections
• hearing loss
• heart, liver and kidney abnormalities
• delayed puberty
• undeveloped ovaries
• greater risk for diabetes
• high risk for celiac
• high risk for osteoporosis
• GERD
• scoliosis
• hypertension
• high risk obesity
• may not have menstruations

Cognitive

• normal intelligence in some cases
• issues with visual spatial
• nonverbal memory
• executive function issues
• difficulty in understanding social cues
• behavior issues.

Mental Health

• low-self-esteem
• anxiety
• depression

Treatment

There is currently no cure for Turner syndrome. Thee following are used to treat including therapies:

• Growth hormones
• Estrogen replacement therapy

 Disability Awareness: International Angelman Day

Date: February 15th

Color/Symbol: Blue

Purpose: International Angelman Day is celebrated and recognized every February 15th. The purpose is to help spread awareness and education others on the rare genetic disorder.

What is Angelman Syndrome?

Angelman syndrome is a rare genetic disorder that id also considered a developmental disability. People with Angelman syndrome will also have an intellectual disability and limited speech. Angelman syndrome generally go unnoticed until the age of 1 year. Children typically have a happy demeanor and have a fascination with water.

Symptoms

• developmental delay
• intellectual disability
• epilepsy
• microcephaly
• short attention span
• happy demeanor
• hyperactivity
• hand-flapping

Associated Behaviors

• tongue thrusting.
• feeding problems during infancy
• sensitivity to heat
• frequent drooling
• attraction to water

Prevalence

Angelman Syndrome is a rare disorder and affects 1 in 12,000 to 20,000 a year. Equally to less than 200,000 case a year. It affects all ethnicities and sexes equally.

Disability Awareness: Rare Disease Day

Date: February 28

Color/Symbol: Zebra Stripe Ribbon

Purpose: Aims to raise awareness to the 300 million people living with a rare disease around the world.

February 29th is the official day of bringing awareness to rare diseases. According to the National Institutes of Health, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Definition of rare disease varies from country to county. In Europe affect 1in 2,000 people and in Canada, more than 3.5 million or 10percent of the population are diagnosed with a rare disease.

Since 2008, Rare Disease Day has raised awareness and bringing attention to the 300 million people worldwide living with the disease. Rare Disease Day is observed every year on February 28 (or 29 in leap years).

Prevalence

• There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world.
• About half of them are children.
• Each rare disease may only affect a handful of people but taken together directly affected is equivalent to the population of the world’s third largest country.
• rare diseases currently affect 3.5%-5.9% of the worldwide population.
• 72% of rare diseases are genetic while others are the result of infections.(bacterial or viral).
• 70% of those genetic diseases start in childhood
• About 30 million people or 1 in 10 people in the United States are affected by a rare disease
• 95% of rare diseases do not have FDA-approval treatment

Disability Awareness: Feeding Tube Awareness Week

Date: February 4-10, 2024

Color/Symbol: Blue and Purple Ribbon

Purpose: Promotes best practices, innovations, and understanding of the lived experiences of families and children reliant on tube feeding.

What is a feeding tube?

A feeding tube is a device that is inserted in the stomach wall and goes directly into the stomach. It bypasses chewing and swallowing in a student or individual who no longer has the ability to safely eat or drink. This allows for students and individuals to receive adequate nutritional support and also provides hydration and medication directly to the stomach or intestine.

A feeding tube is also used for students and adults who cannot take in enough food by mouth. Feeding tubes can be temporary or permanent.

Reasons to use a feeding tube.

The student or individual may have a swallowing disorder or dysphasia. This means there is an increased risk for the student or individual to aspirate their foods or liquids into their lungs. Causes of swallowing problems include low-muscle tone, brain injury, genetic conditions, sensory issues, neurological conditions, cleft lip/palate and birth defects of the esophagus or stomach.

Neurological and Genetic Conditions Requiring Tube Feeding

Some students and individuals with neurological and genetic conditions often require tube feeding due to gastrointestinal issues including constipation, reflux, and abnormal food-related behaviors. It For example, it is estimate that 11% of children with cerebral palsy use a feeding tube due to difficulty with eating, swallowing, and drinking.

Types of G-Tubes

Nasogastic Feeding Tube

The Gastrostomy tube (G-Tube) is placed through the skin into the stomach and is usually for short-term tube feeding.

 Gastrostomy Tube 

Is placed through the skin into the stomach and the intestine. Used for long-term use and is used for a person who has a risk for aspiration and has difficulty keeping food from moving from the stomach to the intestine.

Jejunostomy tube

Goes through the skin directly into the small intestine and is used for long- term feeding when there is a blockage in the stomach.

Side Effects

• cramps
• constipation
• aspiration
• vomiting
• bloating

Care of the feeding tube

• Should be cleaned daily.
• The feeding tube should be flushed with water after the feeding. This will prevent clogging.
• In order to prevent skin breakdown, keep the site open to air as much as possible and apply waterproof skin protection.
• Notify your healthcare professional if there is any redness, swelling, four odor and skin breakdown around the area.

The following are different types of neurological or genetic conditions that may require the use of a feeding tube.

22q11.2 , Deletion Syndrome, Angelman Syndrome, Aspiration, Cerebral Palsy, CDKL5 Disorder, Cornelia de Lange, Cri Du Chat Syndrome, Down Syndrome, Dravet Syndrome, Dysphasia, Edwards Syndrome, Fetal Alcohol Syndrome, Fragile X Syndrome, Hydrocephalus, Lennox-Gestaut Syndrome, Microcephaly, Ohtahara Syndrome, Turner Syndrome, Trisomy 18, Spastic Diplegia,Traumatic Brain Injury, West Syndrome ,Williams Syndrome

Disability Awareness: Congenital Heart Defect Week

Date: February 7- February 14, 2024

Color/ Symbol: Blue and Red

Purpose: To recognize children living with congenital heart disease, celebrate their journey and increase public awareness of thee heart conditions.

Congenital Heart Defect Awareness Week is observed each year during February 7-14 to promote awareness and education about congenital heart defects. The disorder affects approximately one in 100 births every year in the United States and are the most common type of birth defect. It is estimated that 1 million children and 1.4 million adults in the United States were living with a congenital heart defect.

According to the Centers for Disease Control and Prevention (CDC. 1 in 157 children and 1 in 680 adolescents and adults had a heart defect. Heart defects are lifelong conditions that require ongoing specialty medical care.

CDC also reports that heart defects are up to 8 times more likely to have a disability than adults without heart defects. Findings show that:

• About 4 in every 10 adults with heart defects have a disability, with cognitive disabilities.
• People with heart defect and at least one disability are more than likely to describe themselves as having poor mental or physical health.
• Congenital heart defects affect nearly 1% or about 40,000- births per year in the United States.
• CHD’s are the leading cause of birth defect-associated infant illness and death.
• About 20% to30% of people with a CHD have other physical problems or developmental or cognitive disorders.
• Children with CHD are about 50% more likely to receive special education services compared to children without birth defects.
• The occurrence and severity of a developmental disability or delay increases with how complex the heart defect is.

The types of congenital heart defects include.

1. atrioventricular septal defect (AV Canal)- a condition caused by the Septum failure to close properly. This occurs during the embryonic stage and results in a large opening at the center of the heart.
2. Persistent Ductus Arteriosus- when a tube that continues to exist after a baby is born. It is a persistent opening between the two major blood vessels leading from the heart.
3. Tetralogy of Fallot- a heart condition composed of four abnormalities: 1) Ventricular Septal Defect 2) a narrowing of the passage from the right ventricular to the lungs 3) an over enlarged right ventricle due to blood back up 4) an over enlarged aorta, which carries blood from the left ventricle to the body.

Congenital Heart Disease can range from severe to mild. Typically, students do not require special care. For those with more severe heart issues, be aware of the signs and symptoms of a student heart disease is getting worse. This includes:

1. Arrhythmia, an abnormal heart rhythm that can cause the heart to beat fast or too slow
2. Congenital heart failure- when the heart cannot pump enough blood and oxygen to meet the needs of the body.
3. Pulmonary hypertension- a type of high blood pressure that affects the arteries in the lungs and the right side of the heart.

Signs and symptoms

• shortness of breath
• fatigue and weakness
• swelling
• rapid or irregular heartbeat
• persistent cough

Things to be aware of in students with heart issues:

• Tires easily or becomes short of breath after exercise.
• May have exercise restrictions.
• May need extra time to go and from classes.

March

Disability Awareness: Cerebral Palsy Awareness Month

Date: March 1- March 31

Color/Symbol: Green Ribbon

Purpose: Is used to bring awareness and to educate the general public.

What is Cerebral Palsy?

Cerebral Palsy is a collection of motor disorders resulting from damage to the brain that can occur before, during and after birth. Congenital cerebral palsy indicates that a person developed cerebral palsy at birth which is the case of the majority of people with cerebral palsy. According to the Centers for Disease Control and Prevention (CDC), Cerebral Palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood. It is estimated that an average of 1 in 345 children in the U.S. have cerebral palsy. For many years, it was thought cerebral palsy was due to lack of oxygen. Studies show this only accounts for 19% of all cases.

Prevalence and Characteristics

• Around 764,000 people in the United States have at least one symptom of cerebral palsy
• Around 10,000 babies are born each year with cerebral palsy
• Boys are diagnosed more often than girls
• Cerebral palsy is the mot commonly diagnosed childhood motor disability in the United States
• Over 77% of children with cerebral palsy have the spastic form
• More than 50% of all children with cerebral palsy can walk independently
• African American children with cerebral palsy are 1.7 times more likely to need assistance with walking or be unable to walk at all
• Around 41% of babies and children with cerebral palsy will have limited abilities in crawling, walking and running.
• Around 41% children with cerebral palsy in the United states have some form of a cognitive disorder
• Behavior problems are common in children with cerebral palsy including social skills and anger issues.
• Seizures are a common associate disorder of cerebral palsy and can range from mild to extreme severe.
• There is no known cure

What Causes Cerebral Palsy?

Studies show that about 10 to 20 percent of children with cerebral palsy acquire the disorder after birth. This includes through infections, jaundice, RH incompatibility and severe oxygen shortage in the brain.

Types of Cerebral Palsy

Ataxic- indicates the muscle tone is too low or too loose

• affects 5 to 10 percent of people with cerebral palsy
• movements are unsteady and shaking
• have difficulty making quick movements

Spastic- refers to the inability of  muscle to relax

• is the most common type of cerebral palsy
• 70-80% of people have spastic cerebral palsy
• will have difficulty moving from one position to another

Athetoid-uncontrolled twisting movements

• Affects 10 to 20% of people with cerebral palsy
• often have difficulty holding themselves in an upright position
• muscles move involuntarily causing limbs to twitch

Classifications

Hemiplegia- The inability to move the arm and leg on one side of the body.

Diplegia-The inability to move either both arms or both legs.

Quadriplegia- A type of cerebral palsy that affects all limbs on both sides of the body

Monoplegia- A type of cerebral palsy that affects only one limb.

 Disability Awareness: Developmental Disabilities Awareness Month

Date: March 1-March 31

Color/Symbol: Silver or Blue Ribbon

Purpose: To help raise awareness about people with intellectual and developmental disabilities.

Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments before the age of 22. A developmental disability can occur before, during or after birth. Common well-known developmental disabilities include autism, Down syndrome, cerebral palsy and Fragile X syndrome. Here are some facts and statistics on developmental disabilities.

• Developmental Disability is a severe, long-term disability that affect cognitive ability, physical functioning or both.
• 1 in 6 or about 15% of children aged 3 through 17 have one or more developmental disabilities.
• Between 2014 and 2016 the prevalence of developmental disability among kids ages 3 to 17 increased from 5.76 percent to 6.99 percent.
• Prevalence of autism increased 289.5%
• Prevalence of ADHD increased 33.0 %
• Males have a higher prevalence of ADHD, autism, learning disabilities, stuttering and other developmental disabilities.
• Children from families with incomes below the federal poverty level had a higher prevalence of developmental disabilities.
• 10% of Americans have a family member with an intellectual disability.
• Intellectual disabilities are 25 times more common than blindness.
• Every year 125,000 children are born with an intellectual disability
• Approximately 85% of the intellectual disability is in the mild category.
• About 10% of the intellectual disability is considered moderate
• About 3-4% of the intellectual disability population is severe.
• Only 1-2% is classified as profound.

Disability Awareness: Multiple Sclerosis Month

Date: March 1- March 31

Color/Symbol: Orange Ribbon

Purpose: March is Multiple Sclerosis Awareness month which Multiple Sclerosis Association of America offers online educational activities including a three-part podcast series, a live webinar and online information through social media.

What is Multiple Sclerosis?

Multiple Sclerosis is a chronic disorder affecting the brain, spinal cord and optic nerves. It affects each person differently. There is currently no cure for MS. There are almost 1 million adults diagnosed with MS.

Cause

• Causes include:
• Autoimmune disorders
• Genetics
• Environmental
• Viruses

Symptoms

The early signs of multiple sclerosis include difficulty with balance, loss of vision, and numbness. Additional signs include difficulty with coordination and the weakening of muscles in the arms and legs, tremors, hearing loss.

Treatment

Treatment includes

• Medication
• Counseling
• Speech, physical or occupational therapy

Disability Awareness: Trisomy Awareness Month

Date: March 1- March 31

Color/Symbol: Light Blue Ribbon

Purpose: An opportunity to celebrate children living with trisomy disorder and raising awareness about the disorder.

Trisomy is a genetic condition where a person is born with an extra chromosome.

Prevalence:

• There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
• Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
• Down syndrome occurs in people of all races and economic levels
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
• A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
• Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
• People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses

The incidence of Down syndrome is between I in 1000 to 1 in 1,100 live birth worldwide.

• Each year, approximately 3,000 to 5,000 children are born with Down syndrome.
• 60-80% of children with Down syndrome having hearing issues
• 40-45% of children with Down syndrome have congenital heart disease

Signs and Symptoms

• Small stature
• Round face with flat profile
• Slanted eyes
• Cleft palate
• Developmental disabilities

Treatment

• Educational support
• Speech therapy
• Physical therapy
• Surgery to repair any physical abnormalities

Disability Awareness: Self-Injury Day

Date: March 1

Color/Symbol: Orange Ribbon

Purpose:  Self injury (Harm) Awareness Month purpose is to spread awareness, break the stigma and provide support to those who self-harm.

What is self-harm?

According to NAMI, self-harm describes the act of purposely harming oneself; this act is often done by burning, cutting, pulling out hair, or picking at wounds to prevent healing- self-harm indicates emotional distress and can lead to injury as severe as broken bones.

Symptoms

Symptoms include the following:

• Behavior and emotions that change quickly
• Frequent reports of accidental injuries
• Scars often in pattens
• Fresh cuts, scratches, bruises or bite marks

Causes

• Poor coping skills
• Difficulty managing emotions

 Disability Awareness: International Wheelchair Day

Date: March 1

Color/ Symbol: Blue Wheelchair/Person

Purpose: International Wheelchair Day is held annually on March 1 to honor the positive impact wheelchair users accomplish every day. The purpose is to bring awareness to the millions of people who need wheelchair.

International Wheelchair Day was founded by Steve Wilkinson who was born with Spina Bifida. 

Disability Awareness: World Down Syndrome Day

Date: March 21

Color/Symbol: Blue and Yellow Ribbon

Purpose:  World syndrome day is marked each year on March 21 which first started in 2007. March 21 was the date selected to highlight the uniqueness of the triplication of the 21^st chromosome which causes Down syndrome. The day has been officially observed by the United Nations since 2012.

Disability Awareness: Purple Day for Epilepsy

Date: March 26

Color/Symbol: Purple Ribbon

Purpose: March 26 is Purple Day is an international grassroots efforts dedicated to increasing awareness about epilepsy worldwide. People om countries around the world wear purple and host events in support of epilepsy.

Epilepsy is a neurological disorder which causes seizures through electrical impulses occurring in the brain. It is the fourth most common neurological disorder. Epilepsy affects 50 million people worldwide. In the U.S., 1 out of 26 people are affected.

A person is considered to have epilepsy if they meet any of the following conditions:

1. At least two unprovoked seizures occurring greater than 24 hours apart.
2. One unprovoked seizure and after two unprovoked seizures occurring over the next 10 years.
3. Diagnosis of an epilepsy syndrome.

Seizures

A seizure is caused by a burst of abnormal activity in the brain. With a seizure, a person has change in awareness, behavior, body movement or sensation. A seizure can last from a few seconds to a few minutes. Seizures can take on many different forms and affect people in different ways.

Auras

Auras are often describes as a warning before the occurrence of a seizure. Not everyone experiences an aura. Some have described it as a change in feeling, sensation, thought or behaviors. this may include:

• An overpowering smell.
• Nausea or indigestion.
• A rising/sinking feeling in the stomach.
• a sleepy/dreamy feeling.

Types of Seizures

Generalized Tonic Clonic Seizures. Involves the entire brain. May also be referred to as a grand mal seizure. This occurs when abnormal electrical activity affects all or most of the brain. often the body will stiffen and then the person will lose consciousness and then the body will shake due to uncontrollable muscle contractions.

Absence Seizure– A brief loss of consciousness or awareness. It generally last only seconds and mainly occurs in children. Signs may include a blank stare, lip smacking and repeated blinking, chewing or hand movement.

Focal Seizures– The burst of electrical activity is contain in one part of the brain. In a simple focal seizure, you may have muscular jerks or strange sensations in one arm or leg. The person does not lose consciousness or awareness.

Causes

• brain trauma
• genetics
• stroke
• tumors
• brain infections
• head injury.

Risk Factors

• Babies who are born small for their age
• Babies who have seizures in the first month of life
• Cerebral Palsy
• Autism Spectrum Disorders
• Conditions with intellectual and developmental disabilities
• Family history of epilepsy (febrile)

Prevalence:

• More people live with epilepsy than autism, spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy combined.
• You can’t swallow your tongue during a seizure. It is physically impossible.
• You should never force something into the mouth of someone having a seizure.
• Don’t restrain someone having a seizure.
• Epilepsy is not contagious.
• Anyone can develop epilepsy.
• Epilepsy is not rare.
• 1 in 26 Americans will develop epilepsy in their lifetime.4An estimated 3 million Americans and 65 million people worldwide live with epilepsy.
• In 2/3 of patients diagnosed with epilepsy, the cause is unknown.
• Up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures). (SUDEP) and other seizure-related causes such as drowning and other accidents.
• SUDEP accounts for 34% of all sudden deaths in children.
• Epilepsy costs the U.S. approximately 15.5 billion each year.
• A seizure is a transient disruption of brain function due to abnormal and excessive electrical discharges in brain cells.
• Epilepsy is a disease of the brain that predisposes a person to excessive electrical discharges in the brain cell.
• It is diagnosed when 2 or more unprovoked seizures have occurred.
• It must be at least 2 unprovoked seizures more than 24 hours apart.
• About 14% have simple partial seizures.
• 36% have complex partial seizures.
• 5% have tonic-clonic seizures.
• Seizures can be caused by head trauma, stokes, brain tumor and a brain infection.
• Causes are unknown in 60 to 70% of cases.
• The prevalence is 1% of the U.S. population.
• Approximately 2.2 to 3 million in the U.S. have seizures.
• It affects all ages, socioeconomic and racial groups.
• Incidents are higher in children and older adults.
• Seizures can range from momentarily blanks to loss of awareness
• Almost 150,000 people in the U.S. develop epilepsy every year.
• No gender is likely to develop than others.
• 1/3 of individuals with autism spectrum disorders also have epilepsy.
• The prevalence of epilepsy in people with an intellectual disability is higher than the general population.

April

Disability Awareness: World Autism Awareness Day 

Date: April 2

Color/Symbol: Infinity Loop

Purpose:  World Autism/Acceptance Day is an internationally recognized day annually on April 2, encouraging member States of the United Nations to take measures to raise awareness about autistic individuals throughout the world.

Autism is a life-long neurological condition that manifests during early childhood and affects people from various backgrounds including gender, race, ethnicity or socioeconomic backgrounds.

Disability Awareness: Autism Awareness Month

Date: April 1- April 30

Color/ Symbol: Infinity Loop

What is an Autism Spectrum Disorder?

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that impacts social, speech, behavioral and motor skills. It is a spectrum disorder meaning it varies from person to person. No two people have the same symptoms. It is estimated that 1% of the population is diagnosed with autism.

Prevalence

About 1 in 40 children has been identified with autism spectrum disorder (ASD).

1 in 42 boys are diagnosed with autism

1 in 189 girls are diagnosed with autism

100 individuals are diagnosed everyday

ASD is reported to occur in all racial, ethnic and socioeconomic groups.

ASD is 4 times more common among boys than girls.

Studies in Asia, Europe, and North American have identified individuals with ASD with an average prevalence of between 1% and 2%.

About 1 in 6 children diagnosed with autism also have a developmental disability.

Parents who have a child with ASD have a 2%-18% chance of having a second child diagnosed with autism

Almost half (44%) of children diagnosed with ASD has average to above average intellectual ability.

ASD commonly co-occurs with other developmental, psychiatric, neurological, chromosomal and genetic diagnoses.

May

Disability Awareness: Ehlers-Danlos Awareness Month

Date: May 1- May 31

Color/Symbol: Black and White Stripe with Rose Ribbon

Purpose: To raise awareness and to provide support to people diagnosed with Ehlers-Danlos syndrome.

What is Ehlers-Danlos?

Ehlers-Danlos syndrome is a group of inherited disorders that affect the connective tissues which support the skin, bones, blood vessels and other organs and tissues. The symptoms range from mild to life-threatening. It is inherited from one or both parents.

Symptoms

• Stretchy skin
• Skin that bruises easily
• Increased range of joint movement
• Loose, unstable joints that dislocate easily
• Fatigue
• Digestive issues
• Wounds that are slow to heal

Treatment

There is no specific treatment, however the symptoms can be managed

Disability Awareness: National Asthma and Allergy Awareness

Date: May 1- May 31

Color/Symbol: Light Blue Ribbon

Purpose: Aims to educate friends, family and patients about asthma and promote awareness about how this chronic respiratory distress can be controlled.

National Asthma and Allergy Awareness month began in 1984 and is sponsored through the Asthma and Allergy Foundation (AAFA).

Asthma is a chronic disease that causes your airways to become inflamed, making it difficult to breathe.

Allergies are one of the most chronic diseases. It occurs when the body’s immune system sees a substance as harmful and overreacts to it causing an allergic reaction.

Facts

• Asthma is a chronic inflammation of the lung airways that causes coughing, chest tightness, and a shortness of breath.
• 8.3% of Americans have asthma
• Asthma prevalence is higher in children (9.4 percent) than in adults (7.7 percent).
• Asthma results in 439,000 hospitalizations and is 1.3 million emergency room visits annually
• Asthma is the most chronic illness in childhood
• More than 3,500 people die of asthma each year
• Asthma symptoms can be triggered by exposure to an allergen
• Asthma is often hereditary
• There is no cure for asthma
• Weather conditions such as extremely dry, wet or windy weather can worsen an asthma condition.
• About 32 million Americans have food allergies
• About 24 million Americans have hay fever

Disability Awareness: Prader Willi Syndrome Awareness Month

Date: May 1- May 31

Color/Symbol: Orange Ribbon

Purpose:  A time to raise awareness and advance research in order to find new treatment.

What is Prader Willi Syndrome?

Prader Willi Syndrome is a genetic disorder resulting from an abnormality of chromosome 15 such as a loss of active genes. In most cases (70%) the paternal copy is missing and, in some cases, (25%), will exhibit two maternal copies of Chromosome 15. The genetic disorder was initially described by John Langdon Down and was named after Drs. Andrea Prader, Heimrich Willi and Alexis Labhart in 1956 and is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

During childhood, individuals diagnosed with Prader-Willi Syndrome tend to eat constantly leading to obesity and for some, type 2 diabetes will develop. This complex disorder affects appetite, growth, metabolism, cognitive functioning and behavior.

Signs and Symptoms

People with Prader-Willi Syndrome (PWS) tend to never feel full (hyperphagia) which leads to constant eating. Signs in infants include problems with strength, coordination and balance. Often there are feeding problems at birth, delayed speech and gross motor development. Children may be born with almond-shaped eyes and undeveloped sexual organs. Cognitive disabilities and developmental delays may also be present.

As children begin to grow, constant craving for food often leads to behavior challenges including hoarding food, eating frozen food and food left in the garbage causing controlling or manipulative behavior.

Medical Issues

Medical concerns may include the following:

• Sleep Apnea
• Respiratory/Breathing
• High pain tolerance
• Severe stomach illness
• Difficulty with vomiting reflex
• Excessive appetite
• Binge eating
• Eye problems
• Choking
• Hypothermia
• Leg Swelling
• Consuming unsafe items
• Negative reactions to medications

Disability Awareness: Williams Syndrome Awareness Month

Date: May 1- May 31

Color/Symbol: Burgundy Ribbon

Purpose: Aims to educate others about Williams syndrome so that they have a better understanding about the condition and the impact it can have on people’s lives/

What is Williams Syndrome?

Williams Syndrome also known as Williams-Beuren syndrome was discovered in 1961 by J.C.P. Williams, a Cardiologist from New Zealand. Williams Syndrome is a rare disorder with a prevalence of 7,500 to 20,000 caused by the deletion of genetic material from chromosome 7. Williams syndrome symptoms include heart problems, low birth weight, l problems and developmental delays. 75 are diagnosed with mile to moderate intellectual disabilities or a learning disability.

Facts and Statistics

• It is a genetic condition that is present a birth.
• It is a developmental disorder
• Tend to have a mild or moderate intellectual disability.
• It is also known as Beuren Syndrome and Williams-Beuren Syndrome.
• The symptoms were first described by John C.P. Williams in 1961.
• A year later, German Physician, A.J. Beuren described three new incidents of patients with similar facial features.
• It is caused by the spontaneous deletion of 26-28 genes on Chromosome #7
• The deletion is caused by either the sperm or the egg.
• The deletion is present at the time of conception
• The most common symptoms of Williams Syndrome includes unusual facial features and heart defects.
• The diagnosis is typically confirmed after identifying facial features and genetic testing.
• An individual with Williams Syndrome has a 50% chance of passing the disorder on to their children.
• Williams Syndrome affects 1 in 10,000 people worldwide.
• An estimated 20,000 to 30,000 people in the United States are affected.
• It occurs in both males and females equally
• It is found in every culture
• Individuals with Williams Syndrome tend to be overly friendly.
• People with Williams Syndrome often have difficulty with visual-spatial tasks
• Congenital heart defects (CHD) occur in approximately 75 percent of children
• By the age of 30, the majority of individuals with Williams Syndrome have pre-diabetes or diabetes.

Physical characteristics include:

• Musculoskeletal
• Almond shape eyes
• Broad forehead
• long neck
• Longer upper lip
• Puffiness around the eyes
• sloping shoulders
• Small chin
• Small upturned nose
• Wide mouth

Disability Awareness: Global Developmental Delay Day

Date: May 1

Color/ Symbol: Yellow Ribbon

Purpose: Global Developmental Delay (GDD) Awareness Day is a day to recognize children who may be delayed in reaching developmental milestones compared to other children their age. GDD is a broad term that describes a significant delay in two or more developmental domains in children under the age of 5. GDD has various causes linked with the functioning of the central nervous system.

What is Global Developmental Delay?

Global developmental delays describe when children do not meet their developmental milestones.

Generally, from the age of 2 months to 5 years old. Although each child is different in their development, milestones are established in order to determine functional skills on age specific tasks.

Fine Motor- Small movement in the fingers used for drawing, painting, buttoning, coloring, and shoe tying. Delays can occur in the following area:

Gross motor- Involves the use of larges muscle groups such as walking, crawling and standing. May impact children diagnosed with cerebral palsy

Fine Motor- Small movement in the fingers used for drawing, painting, buttoning, coloring, and shoe tying.

Speech and language delay- A delay in language may be due to motor-oral problems.

Prevalence

• 1-3% of children under the age of 5. It is estimated that between 40,000-120,000 children born

Disability Awareness- National Barrier Awareness Day

Color/Symbol: Blue

Purpose: National Barrier Awareness Day brings awareness to dissolving stigma’s that keep people with disabilities from advancing in education, barriers in physical access, bridging technology gaps and any type of barriers that prevent people with disabilities to reach their full potential. While there have been many achievements, financial, cultural education and physical barriers still exist.

The History of National Barrier Awareness Day

On May 7 1986, President Ronald Reagan signed Proclamation 5472 as National Barrier Awareness Day.  President Reagan stated that “Eighty percent of Americans will experience some disability in their lifetime that makes it necessary they must surmount and the contributions that they can make to our society.”

Ways to Remove Barriers

While there are still physical barriers that exists, there is very few information on the mental barriers, meaning people that still hold misconceptions, stereotypes and myths regarding individuals with disabilities. what do I mean by mental barriers?

1. people that are unaware that most disabilities are invisible. Someone parking in a handicapped space might not have a physical disability but could suffer from a debilitating pain. There are also people with cognitive disabilities including, Autism, ADHD, and Dyslexia.
2. As professionals, myths, and misconceptions continue when we as professionals stop learning and growing. Disabilities change overtime and as professionals and educators it is important to always learn and grow. For examples, very little was known about autism 25 years ago and more so when it comes to co-occurring disorders such as sensory processing disorder (SPD) and Dysgraphia.
3. It is time to see the abilities not the disabilities in the person. By focusing on disabilities, we limit the growth and development which leads to self-confidence to those with disabilities.

Finally, we all have to take the role of advocates. It comes as part of the job. Sometimes it is advocating for both parent and child and using our voice to help others live quality lives.

Disability Awareness: May 5-12- Cri du Chat Awareness Week

Date: Observed first full week in May

Color/Symbol: Blue Symbol

Purpose: To raise awareness and encourage support of those with the syndrome.

Cri-Du Chat, French for cry of the cat is a rare genetic disorder that occurs when there is a total or short deletion in the short arm of Chromosome 5. This portion of the chromosome is responsible for intellectual disability while the region of 5p15.3 is associated with speech delays and the high-pitched cat cry.  The high pitch cry is similar to the sound of a cat mewing which generally disappears after a few months or years in some cases. It is believed this is due to laryngeal alterations.

Although cri du chat is a rare syndrome, it is considered one of the most common syndromes in children and adults. There is an incidence of 1 in 50,000 live births and affects all ethnic and racial backgrounds.

 

Signs and Symptoms

Physical signs and symptoms include:

• microcephaly
• large nasal bridge
• down-turned corners of the month
• low-set ears
• Intellectual disability
• Hypertonia
• Global and developmental delays
• Speech and communication delays
• Behavior challenges

 

Early Development

Studies show that in early development, during the first two years, children display issues with dysphasia, muscle hypotonia, and gastroesophageal and nasal reflux. Other early issues include recurrent respiratory infections and psychomotor issues.

Intellectual Disability

Intellectual disability is defined by the ICD-9 as a disorder with onset during the development period including both intellectual and adaptive functioning deficits. People with cri du chat typically fall under the moderate and severe range requiring personal care involving eating, dressing, and hygiene as well as self-care and monitored for self-injury.

Behavior Challenges

Behavior challenges among children and adults with cri du chat include aggressive and self-injurious behavior as well as hyperactivity. A study conducted by Cornish and Pigram (1996) found that there was one characteristic that occurred in more than 75% of the group and none characteristics that occurred in more than 50% of the group including hypersensitivity, to sensory stimuli, self0injurious behavior, repetitive movements, stubbornness and object attachment.

June

Disability Awareness: Aphasia Awareness Month

Date: June 1- June 30

Color/Symbol: Silver Ribbon

Purpose: To educate and raise awareness on the challenges of aphasia

What is Aphasia?

Aphasia is a language disorder that affects a person’s ability to understand and express language, reading and writing. It is caused by damage to the brain’s language areas, which are usually located on the left side of the brain. Aphasia can occur suddenly, often after a stroke or head injury, or it can develop slowly as a result of a brain tumor or progressive neurological disease.

Symptoms

• Speak unrecognizable words
• Difficulty finding words
• Not understanding what they read
• Speak in short or unrecognizable words

Treatment

• Speech-language therapy
• Non-verbal communication therapies
• Group therapies

 

Disability Awareness: Helen Keller Deaf-Blind Awareness Week (Last Sunday in June)

Date: Last Sunday in June 

Color/Symbol

 Purpose: To raise public awareness about individuals who have combined hearing and visual loss.

Helen Keller Deaf-Blind awareness Week is observed each year the last week in June in honor of Helen Keller’s birthday on June 27th.

On June 22, 1984, President Ronald Reagan proclaimed the week beginning June 24, 1984, as Helen Keller Deaf-Blind awareness Week. The purpose is to encourage public recognition of and compassion for the complex problems caused by deaf-blindness and to emphasize the potential contributions of deaf-blind people.

 Disability Awareness: CDKL5 Awareness Day 

Date: June 17th

Color/Symbol: Light Green Ribbon

Purpose: June 17 is International CDKL5 Day in memory of Glyn Boltwood whose life and legacy was directly responsible for the medical and scientific community discovering CDKL5 Disorder in 2004 and to promote awareness efforts, research, collaboration, and fundraising

What is CDKL5?

CDKL5 is a neurodevelopmental disorder that includes signs of early-onset epilepsy. 90% of children diagnosed with CDKL5 disorder are more likely to develop epilepsy. CDKL5 is derived from a gene and one of the most common causes of genetic epilepsy. Children diagnosed with CDKL5 also face many other developmental challenges as well.

Signs and symptoms

• Early onset epilepsy
• Impaired gross motor skills
• Impaired fine motor skills
• Autistic features
• Impaired language
• Sleep abnormalities
• Low muscle tone

Disability Awareness: Tourette Syndrome Awareness Month

Date: June 1- June 30

Color/Symbol: Teal Ribbon

Purpose:  Aims to increase public awareness of Tourette syndrome, promote understanding, compassion, support and to dispel myths about it.

What is Tourette syndrome?

According to the Tourette Association of America, tics are involuntary, repetitive movement and vocalizations. They are the defining feature of a group of childhood-onset, neurodevelopmental conditions known collectively as Tic disorders and individually as Tourette Syndrome.

Tics are common in childhood. The estimated prevalence of Tourette Syndrome disorder ranges from 3 to 8 per, 1,000 in school-aged children. Males are more commonly affected than females. Some people may have tic-free periods of weeks to months.

There are three types:

1. Motor tics cause a movement including eye blinking, facial grimacing, jaw movements, and head bobbing
2. Vocal/phonic tics produce a sound including throat clearing, grunting, hooting, and shouting
3. Provisional tic disorders involve a person who experiences involuntary motor and/or verbal tics for one year.

Signs and Symptoms:

Tic Disorders:

• eye blinking
• coughing
• throat clearing
• sniffing
• facial movement
• shoulder shrugging

Vocal Tics:

• barking or yelping
• grunting
• repeating what someone else says
• shouting
• sniffing
• swearing

Co-Occurring Disorders Include:

• Attention Deficit/Hyperactivity Disorder (ADHD)
• Obsessive -Compulsive Disorder
• Learning difficulties
• Behavior problems
• Anxiety
• Mood problems
• Sleeping issues
• Social skills and deficits

Disability Awareness: Dravet Awareness Month

Date: June 1 -June 30

 Ribbon/Awareness: Purple Ribbon

Purpose: Aims to raise awareness of Dravet syndrome by educating the public, improving diagnosis supporting families and addressing the stigma associated with the condition.

Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI) is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime.

Dravet syndrome has an estimated incidence rate of 1:15,700 comorbidities include developmental delays. Common signs and symptoms include:

• prolonged seizures
• frequent seizures
• behavioral and developmental delays
• movement and balance issues
• delayed language and speech issues.

Children with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected death in Epilepsy), prolonged seizures, seizures-related accidents such as drowning and infections

July

Disability Awareness: Disability Pride Parade (NY)

Date: July 14

Color/Symbol: None

Purpose: Meant to keep the Americans with Disabilities Act and Disability pride Month’s celebratory and collaborative momentum strong and energized.

According to the Americans with Disabilities Act, a disability is defined as if she/he has a physical or mental impairment that substantially limits one or more major life activities, a record of such impairment, or is regarded as having an impairment.

According to the Centers for Disease Control (CDC), 61 million adults in the United States live with a disability.

• The percentage of people living with disabilities is highest in the south.
• 7% have serious difficulties walking or climbing stairs
• 8% have serious difficulty concentrating, remembering, or making decisions
• 8% difficulty doing errands alone
• 9% are deaf or have difficulty hearing
• 6% are blind or having difficulty seeing
• 7% have difficulty dressing or bathing independently
• 2 in 5 are adults aged 65 years or older
• 1 in 4 women have a disability
• adults living with disabilities are more likely to have obesity, smoke, have heart disease and diabetes.

The U.N. Convention on the Rights of Persons with Disabilities adopts the social model of disability that recognizes:

• That disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others and;
• Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

• According to the World Report on Disability, about 15% of the world/s population lives with some form of disabilities,. of whom 2-4% experiences significant difficulties in functioning. A disability can be visible or invisible.

Causes

A disability can occur before, during or after birth. Before birth could be a genetic problem, chromosomal, infection or exposure to chemicals. During birth can be due to lack of oxygen and after ranges from seizures, car accidents, drownings, strokes, etc.

Types

• Chromones/Genetic
• Neurodevelopmental
• Physical Impairments
• Psychiatric
• Chronic Disabilities

Disability Awareness: National Fragile X Syndrome Awareness Day

Date: July 22

Color/Symbol: Teal Ribbon

Purpose: Celebrates families impacted by Fragile X syndrome and highlights advancement of research to find effective treatment and ultimately finding a cure.

What is Fragile X Syndrome?

Fragile X Syndrome is a genetic disorder that causes intellectual disability and learning challenges. Most males are affected and fall within the range of moderate and mild intellectual disabilities. Features include long and narrow faces, large ears and a prominent jaw and forehead.

Prevalence 

• Males are more affected than females.
• Seizures occur in about 15% of males and 5% of females
• 1/3 individuals have similar characteristics of autism
• Fragile X occurs in approximately 1 in 4,000 males and 1 in 8,000 females

Causes

Fragile X Syndrome results from a change or mutation found on the X chromosome. Research shows that not everyone with he mutated gene displays symptoms of Fragile X Syndrome. This may be due to the size of the Mutation. the number of cells that have the mutation.

Signs and Symptoms?

• Dislikes being touched
• Difficulty in changed routines
• Good Memory
• Good mimicking skills
• Hand biting
• Gastrointestinal issues
• Impulsivity
• Long Face
• Prominent ears
• Flat feet
• Poor abstract thinking
• Weak fine motor skills
• Shyness
• Perseveration

Co-Occurring Disorders

• ADHD
• Autism Spectrum Disorder
• Intellectual Disability
• Learning Disability
• Seizures

September

Disability Awareness: Duchenne Muscular Dystrophy Awareness Day

Date: September 7

Color/Symbol: Green Ribbon

Purpose: Duchenne Muscular Dystrophy Awareness Day raise awareness. And promote education. About. To Duchenne muscular dystrophy. Including advocating for social inclusion, sharing personal stories of those living with the disease, and inspiring action to improve lives.

 What is Duchenne Muscular Dystrophy?

Is. One of the nine types of muscular dystrophies first described by French neurologist, Guillaune Benjamin Amans Duchenne in the 1860s. It is inherited disorder characterized by progressive muscle degeneration and occurs in about one out of every 3600 male infants.

Causes

It is caused by an absence of dystrophies. A protein that bonds the muscle cell.

Sign and symptoms

• Start appearing between the ages of three to five.
• By the age of 12, most males affected may lose their ability to walk.
• Early symptoms include muscle weakness and the hips, pelvic area, thighs and shoulders.
• Most carriers do not show any signs or symptoms.

Treatment

No known cure.

Disability Awareness: Fetal Alcohol Spectrum Syndrome Awareness Month

Date: September 1- September 30

Color/Symbol: Silver and Blue Ribbon

Purpose: The National Institute on Alcohol Abuse and Alcoholism recognizes International Fetal Alcohol Syndromes Disorders Awareness Day as a reminder that there is no safe amount of alcohol consumption during pregnancy.

Disability Awareness: Hydrocephalus Awareness Day

Date: September 20th

Purpose: It also aims to shed light on the condition and promote worldwide unity among patients, caregivers, healthcare professionals, and advocacy organizations by fostering understanding and compassion.

Disability Awareness: Hydrocephalus Awareness Month

Date: September 1- September 30

Ribbon Color: Light Blue

Purpose: A day dedicated to raising awareness about hydrocephalus and showing support for individuals living with this complex neurological condition.

Some people refer to hydrocephalus as ‘water on the brain.” The name is taken from the Greek words “hydro” meaning water and “cephalus” referring to the head. Hydrocephalus is actually a buildup of cerebrospinal fluid (CSF) within the cavities in the brain inside the ventricles. The purpose of the Cerebrospinal fluid is to serve as a protective cushion surrounding the brain and the spinal cord.

The fluid moves in constant circulation and is then absorbed into the blood stream. Hydrocephaly occurs when the fluid begins to build up in the cavities causing excess fluid to increase in the ventricles, adding pressure on the brain which can cause damage to the brain tissues.

Types

There are two major types of hydrocephalus:

Congenital. In this case, a child was born with it. The cause could be due to both genetic or environmental factors during the early stages of fetal development such as an infection or a birth defect or rubella. Through advanced technology, hydrocephaly can now be diagnosed through ultra sound testing

Acquired.  Occurs when it is developed after birth. It may be due to a brain tumor, stroke, head injury or meningitis

Communicating.  (Obstructive) Occurs when the CSF becomes blocked after leaving the ventricles

Non- Communicating. (Non-Obstructive) occurs when the craniospinal fluid becomes blocked after leaving the ventricles.

Disability Awareness: World Duchenne Awareness Day

Date: September 7

Ribbon Color: Green

Disability Awareness: Fetal Alcohol Awareness Day

Date: September 9

Ribbon Color: Silver and Blue

Fetal Alcohol Spectrum Disorders (FASD) according to the National Organization on Fetal Alcohol Syndrome describes the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These affects may include physical, mental, behavioral, and/or learning disabilities with lifelong implications.

Purpose: The National Institute on Alcohol Abuse and Alcoholism recognizes International Fetal Alcohol Syndromes Disorders Awareness Day as a reminder that there is no safe amount of alcohol consumption during pregnancy.

Fetal Alcohol Spectrum Disorders is not a diagnosed rather, it is a term that is used to describe a wide range of effects on a person whose mother drank alcohol during her pregnancy. Fetal Alcohol Spectrum Disorders, show in three areas: abnormal facial characteristics, slowed growth and the central nervous system.

Fetal Alcohol Spectrum Disorders affects each person differently. Signs and symptoms include the following:

• Abnormal facial features including a smooth ridge between the nose and upper lip
• Small head size
• Shorter than average height
• Poor coordination
• Hyperactive behavior
• Difficulty with attention
• Poor memory
• Difficulty in school
• Learning disabilities
• Speech and language delays
• Intellectual disability or low IQ
• Poor reasoning and judgement skills
• Sleep and sucking problem
• vision and hearing problems
• Seizures
• Processing information
• Problems with the heart and kidneys
• Poor concept of time
• Trouble getting along with others
• Staying on task

October

Disability Awareness: World Dyslexia Awareness Day

Date: October 8^th

Color/Symbol: Silver Ribbon

Purpose: provides an opportunity for various activities and initiatives to raise awareness about dyslexia

Disability Awareness: ADHD Awareness Month

Date: October 1-October 31

Color/Symbol: Orange Ribbon

Purpose: ADHD aims to raise awareness about attention deficit/ hyperactivity disorder. And to help people with ADHD and their families, including educating the public, reducing the stigma and empowering people with ADHD.

Attention Deficit Hyperactivity Disorder (ADHD)  is a neurological disorder characterized by a pattern of inattention and/or hyperactivity-impulsivity that disrupts functioning in both children and adults

The DSM-V defines ADHD as a persistent pattern of attention and or hyperactivity-impulsivity that interferes with functioning of development. Inattention symptoms include the following:

• often fails to give close attention to details
• often has difficulty sustaining attention in task or play activities
• often does not listen when spoken to directly
• often does not follow through on instructions
• often has difficulty organizing task and activities often avoids, dislikes or is reluctant to engage in task that requires sustained mental effort.

Hyperactive symptoms include:

1. trouble paying attention
2. restlessness
3. excessive talking
4. loud interaction with others
5. frequent interventions
6. may have a quick temper

Prevalence:

ADHD is a condition characterized by inattentiveness, hyperactivity and impulsivity

It is one of the most common neurodevelopmental disorders of childhood

It is usually diagnosed in childhood and last into adulthood

People diagnosed with ADHD may have difficulty paying attention and or controlling impulsive behavior

70% of people with ADHD in childhood will continue to have it in adolescence

50% will continue into adulthood

ADHD is not caused by watching too much, parenting or having too much sugar

ADHD may be caused by genetics, brain injury or low birth weights

Is a highly genetic, brain-based syndrome that has to do with the brain regulation in executive functioning skills

Disability Awareness: Disability History Month

Date: October 1- October 31

Color/Symbol: Orange Ribbon

Purpose: Aims to increase awareness, Respect, an acceptance for people with disabilities. And to help them feel more pride. Activities include. The following.

• Teaching the history of disability
• Watching films.
• Focusing on individuals with disabilities
• Providing instruction and events on disability history.

Disability Awareness: Down Syndrome Awareness Month

Date: October 1-Octobeer 31

Color/Symbol: Blue and Yellow Ribbon

Purpose: Aim to educate the public about sound Down syndrome. Celebrate the abilities and accomplishments of people with Down syndrome, advocates for the rights and inclusion raising awareness.

Disability Awareness: National Disability Employment Awareness Month

Date: October 1- October 31

Color/Symbol: None

Purpose: To recognize the contributions of people with disabilities to the economy and workplace and to promote inclusive employment practices.

Disability Awareness: National Dyslexia Awareness Month

Date: October 1- October 31

 Color/Symbol: Silver Ribbon

Purpose: Promoting a more accessible and inclusive world for people with dyslexia and low literacy. As well as celebrating dyslexic excellence.

What is Dyslexia?

Dyslexia is also known as a language-based disability. It is defined as difficulties with accurate and word recognition and by poor spelling which can affect reading fluency, reading comprehension, recall, decoding, writing, spelling, and sometime speech. Signs of dyslexia in adults include

• Poor spelling
• Avoids writing task
• Gifted and creative
• Difficulty in following oral and written instructions
• Difficulty staying on task
• High level of frustration
• Difficulty in retaining information
• Test-taking anxiety.
• Highly curious
• Insightful
• Curiosity
• Good communication of stories read to them

It is estimated that 1 in 10 people have dyslexia which is between 5 to 15% of Americans.

Causes

No clear evidence at this time but studies show differences in the way the brain develops and functions

Treatment

It is a life-long condition, however early detection and evaluation can determine appropriate treatment.

Awareness: World Cerebral Palsy Day

Date: October 6

Color/Symbol: Green Ribbon

Purpose: World Cerebral Palsy Day is celebrated on October 6^th each year to raise awareness and support people with cerebral palsy (CP) and their families. The day also aims to create more inclusive societies and ensure that people with cerebral palsy have the same rights, access, and opportunities as everyone else.

Disability Awareness: White Cane Awareness Day

Date: October 15

 Color/Symbol: White Cane

Purpose: White Cane Awareness Day, also known as White Cane Safety Day, is celebrated on October 15th to promote awareness of people who use white canes or Guide Dogs, and to. Recognize their achievements. Of people who are blind or visually impaired. And honor their contribution to society.

Disability Awareness: October 13-19 Invisible Disabilities Week

Date: October 20-26, 2024

Ribbon Color: Green background with Dandelions

Purpose: Aims to raise awareness and educate, support people with invisible disabilities, which are physical, mental, or neurological conditions that can limit a person’s movement, senses or activities.

What is an Invisible Disability?

 According to the Invisible Disabilities Association, the term invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunction, brain injuries, learning differences, mental health disorders, as well as hearing and visual impairments. They are not always obvious to the onlooker, but can sometimes or always limit daily activities range from mild challenges to severe limitations and vary from person to person

Invisible disabilities are not often noticed immediately and can include cognitive disabilities, chronic fatigue, sensory processing disorder dyslexia, ADHD, autism, chronic pain. 96% of people of chronic illness have invisible disability estimating 1 in 10 Americans live with an invisible disability. Many go through their day without revealing what disability they may experience and how it impacts them physically and emotionally.

Disability Awareness: Rett Syndrome Awareness Month

Date: October 1- October 31

 Color/Symbol: Purple Ribbon

Purpose: Aims to increase awareness of Rett Syndrome through organized events and educational programs.

 What is Rett Syndrome?

Rett syndrome is a neurodevelopmental disorder occurring mostly in females in which the child exhibits reduced muscle tone, autistic-like behaviors, stereotyped hand movements consisting of wringing and waving. It is a rare disorder that affects about 1 out of 10,000 children and is the most genetic causes of severe intellectual disability in females. Due to similarities to autism and cerebral palsy, it is often misdiagnosed.

Signs similar to autism include outburst, eye contact avoidance, and lack of social reciprocity, sensory issues and loss of speech. Signs of Rett syndrome similar to cerebral palsy include short stature, difficulty with walking, gait movement difficulties and delayed ability to walk.

Typically, children born with Rett syndrome develop normally until the age of 6 and 18 months and reach typical development milestones including eye contact, rolling over and grasping objects. As children grow, motor development begins to slow such as walking and muscle movement. The first signs is usually the loss of muscle tone where the child’s arms and legs appear “floppy.”

Other early signs include:

• Loss of communication abilities
• Unusual eye movement
• Breathing problems
• Irritable and crying often
• Intellectual disability
• Seizures
• Scoliosis
• Sleep disturbance
• Irregular heartbeat

November

Disability Awareness: 22q Awareness Month

Date: November 22

Color/Symbol: Teal

Purpose: of the month is to educate people about 22. Q 11.2. Foundation by prompting awareness, calmer research and fundraising.

22q11.2 deletion syndrome, is a rare disorder that is caused by a deletion in chromosome 22 located specifically in the middle of the chromosome in the area referred to as 22q11.2. This syndromes affects 1 out of 4000 people and signs and symptoms include, developmental delays, poor muscle tone, learning development, feeding issues and hearing loss.

Associated Conditions

• cardiac anomalies
• cleft palate
• kidney abnormalities
• language delays
• learning challenges
• developmental delays
• feeding disorders
• autism
• ADHD
• Poor Working and short term memory
• Difficulty with math reasoning
• Difficulty with reading comprehension
• Fine motor and perceptional skills

Disability Awareness: Epilepsy Awareness Month

Date: November 1-November 30

Color/Symbol: Purple Ribbon

Purpose: Epilepsy awareness month. Is a month-long campaign in November that aims to raise awareness about epilepsy and seizures, educate the public, and fight social stigma. NE AM also provides an opportunity to honor people. With epilepsy and their caregivers, and to remember those who have died from sudden unexpected death and epilepsy. (SUDEP)

Definition:

Epilepsy is a neurological disorder which causes seizures through electrical impulses occurring in the brain. It is the fourth most common neurological disorder. Epilepsy affects 50 million people worldwide. In the U.S., 1 out of 26 people are affected.

A person is considered to have epilepsy if they meet any of the following conditions:

1. At least two unprovoked seizures occurring greater than 24 hours apart.
2. One unprovoked seizure and after two unprovoked seizures occurring over the next 10 years.
3. Diagnosis of an epilepsy syndrome.

Seizures

A seizure is caused by a burst of abnormal activity in the brain. With a seizure, a person has change in awareness, behavior, body movement or sensation. A seizure can last from a few seconds to a few minutes. Seizures can take on many different forms and affect people in different ways.

Auras

Auras are often describes as a warning before the occurrence of a seizure. Not everyone experiences an aura. Some have described it as a change in feeling, sensation, thought or behaviors. This may include:

• An overpowering smell.
• Nausea or indigestion.
• A rising/sinking feeling in the stomach.
• a sleepy/dreamy feeling.

Types of Seizures

Generalized Tonic Clonic Seizures. Involves the entire brain. May also be referred to as a grand mal seizure. This occurs when abnormal electrical activity affects all or most of the brain. often the body will stiffen and then the person will lose consciousness and then the body will shake due to uncontrollable muscle contractions.

Absence Seizure– A brief loss of consciousness or awareness. It generally last only seconds and mainly occurs in children. Signs may include a blank stare, lip smacking and repeated blinking, chewing or hand movement.

Focal Seizures– The burst of electrical activity is contain in one part of the brain. In a simple focal seizure, you may have muscular jerks or strange sensations in one arm or leg. The person does not lose consciousness or awareness.

Causes

• brain trauma
• genetics
• stroke
• tumors
• brain infections
• head injury.

Risk Factors

• Babies who are born small for their age
• Babies who have seizures in the first month of life
• Cerebral Palsy
• Autism Spectrum Disorders
• Conditions with intellectual and developmental disabilities
• Family history of epilepsy (febrile)

Prevalence:

• 1 in 26 Americans will develop epilepsy in their lifetime.4An estimated 3 million Americans and 65 million people worldwide live with epilepsy.
• In 2/3 of patients diagnosed with epilepsy, the cause is unknown.
• Up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures). (SUDEP) and other seizure-related causes such as drowning and other accidents.
• SUDEP accounts for 34% of all sudden deaths in children.
• Epilepsy costs the U.S. approximately 15.5 billion each year.
• A seizure is a transient disruption of brain function due to abnormal and excessive electrical discharges in brain cells
• Epilepsy is a disease of the brain that predisposes a person to excessive electrical discharges in the brain cell.
• It is diagnosed when 2 or more unprovoked seizures have occurre
•  It must be at least 2 unprovoked seizures more than 24 hours apart.
• About 14% have simple partial seizures.
• 36% have complex partial seizures.
• 5% have tonic-clonic seizures.
• Seizures can be caused by head trauma, stokes, brain tumor and a brain infection.
• Causes are unknown in 60 to 70% of cases.
• The prevalence is 1% of the U.S. population.
•  Approximately 2.2 to 3 million in the U.S. have seizures.
• The prevalence of epilepsy in people with an intellectual disability is higher than the general population.

Disability Awareness: LGS Awareness Day

Date: November 1

Color/Symbol: Purple Ribbon

Purpose: International Lennox-Gastaut Syndrome. Awareness Day is celebrated on November first each year to raise awareness of the rare, severe epilepsy syndrome that affects children and adults worldwide. The LGS Foundation. Organizes events, fundraisers, and social media campaigns.

What is Lennox-Gastaut Syndrome?

Lennox-Gastaut Syndrome is a type of epilepsy where a person may experience multiple types of seizures including tonic (stiffening of the body), atonic (brief loss of muscle tone), and atypical absence  (starring). This type of seizure often begins during infancy and early childhood.

Statistics and Facts

4% of children with epilepsy are diagnosed with Lennox-Gastaut Syndrome with more of a prevalence in males than females. Most mortality rates are due to accidents.

Other Known Names

LGS

Symptoms

Symptoms often include frequent seizures and multiple types of seizures including:

• Atonic seizures (drop attacks)- a sudden loss of muscle tone and limpness, a person may suddenly fall which can lead to head injuries.
• Tonic seizures- the body stiffens and can last for up to a minute. Will generally occur when the person is asleep.
• Abnormal seizures- a period pf unconsciousness where the person has no memory of the episode.

Causes

• Abnormal development of the brain cortex
• Congenital infections
• Stroke
• Trauma
• Lack of oxygen during birth
• Encephalitis
• Meningitis
• Tuberous Sclerosis
• Seizures that start in infancy referred to as West syndrome

Diagnostic and Test 

• Clinical evaluation
• Detailed patient history
• Complete physical and neurological evaluation
• Electroencephalography (EEG)
• Magnetic Resonance Imaging (MRI)

Treatment

• Anti-epileptic drugs (AED’s)
• Dietary therapy
• Surgery (VNS therapy)

Disability Awareness: World Ohtahara Syndrome Awareness Day

Date: November 15

Color/Symbol: Purple Ribbon

Purpose: The goal is for all medical professionals, from doctors and nurses to physical therapist and speech therapist, to learn more about the children they are working with, details about their diagnosis and other conditions that are related to. Ohtahara syndrome.

What is Ohtahara Syndrome?

Ohtahara Syndrome is a rare type of seizure that affects infants and newborns. It is generally diagnosed before the age of 3 months. After several months, seizures may turn into West Syndrome or Lennox- Gestaut Syndrome.

Causes

• Brain malfunctions
• Metabolic disorders
• Certain gene mutations

Symptoms

• Tonic spasm
• Focal spasm (partial) motor seizures

Diagnosis and Testing

• EEG- records the electrical activity in the brain
• MRI
• Bloodwork

Treatment

May be resistant to epilepsy medication. The following medication may be used: Phenobarbital, Clobazam or Vigabatrin.

December

Disability Awareness: International Day of Persons with Disabilities

Date: December 3

Ribbon Color: None

Purpose: the day is about promoting the rights and well-being of persons with disabilities at every level of society and development, to raise awareness of the situation of persons with disabilities and all aspects of political, social, economic and cultural life.

Disability Awareness: Infantile Spasm Awareness Week (West syndrome)

Date: December 1-7

Ribbon Color: purple ribbon with flowers attached

Purpose: is celebrated annually from December 1st to the 7th to educate the public about infantile spasms. More than 30 international organizations work to raise awareness.

What is West’s Syndrome?

The average onset generally begins at an average age of 6 months. Symptoms may include a pattern of an infant bending forward with a stiffening of the body, including the arms and the legs. Each episode generally last for a few seconds. These episodes typically occur in clusters that can last up to 20 minutes.

Causes

• Trauma
• Brain malfunctions
• Infections
• Down syndrome
• Tuberous sclerosis complex

Statistics and Facts

West syndrome occurs 1 in every 2,000 to 6,000 live births, which peak between the ages of 4 and 7 months old. 90 percent of incidences occur before the age of 1 year. West syndrome accounts for approximately 30 percent of incidences involving infants. Boys are more likely to be affected than girls.

Other Know Names

• Infantile Spasms

 History

Initially discovered in the 1840’s by Dr. William James West when he noticed his own son, James E. West showed the characteristics of “bobbings” that caused a complete heaving of the head towards his knees and then immediately relaxing to the upright position. Dr. West originally coined the phenomena as “Salaam Tics”.

Diagnosis and Testing

• Electroencephalography (EEG)
• A physical and neurological exam
• Computer Tomography (CT)
• Magnetic resonance Imaging (MRI)
• Blood Test
• Urine Test
• Wood Lamp (for the purpose determining if tuberous sclerosis is a possible diagnosis)

Treatment

• Steroid therapy by injection into a muscle or prednisone by mouth
• A seizure medication called Sabril
• Ketogenic diet