Category Archives: Awareness Month

Dravet Awareness Month

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Date: June1, 2022-June 30, 2022

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 drowing and infections

Ways to get Involved:

help through fundraising

purchase merchandise

change your social media profile to bring awareness to Dravet syndrome

Tourette Syndrome Awareness Month

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Date: May 15- June 15, 2022

June is Tourette Syndrome Awareness Month.

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 range 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

Resources:

Ways to raise awareness: Participate in Awareness Month – Tourette Association of America

Williams Syndrome Awareness Month

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Date: May 1- May 30, 2022

May is Williams Syndrome Awareness Month.

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 in 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

Learning Characteristics

During Williams Syndrome Awareness Month, You can create a fundraising page or team

Download awareness event planning tools

purchase an awareness t-shirt

For more information: Awareness Month | Williams Syndrome Association (williams-syndrome.org)

Autism Acceptance Month

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Date: April 1- April 30, 2022

What is a 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 idendified 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.

Stimming

  • It is also prevalent among people on the autism spectrum.
  • In fact in many cases, it is part of the diagnosis due to the repetition of stimming.
  • Stimming is often used as a means to self-regulate, self-calm and for self-expression.
  • The movements are repetitive and are used to self-stimulate the 7 senses.
  • It is often described as a repetitive motor behavior that can disrupt academic and social and other activities.
  • One of the theories behind stimming is that beta-endorphrins are released in the brain casuing an euphoric feeling which is generally a response to pain.
  • Stimming behavior. based for self-soothing and to help a child or an adult regain emotional balance.
  • Sensory Overload. Too much sensory information can lead to stress, anxiety and eventually a meltdown.

Wandering Statistics

  • Nearly half of children with autism engage in wandering behavior
  • Increased risks are associated with autism severity
  • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
  • Half of families report they have never received advice or guidance about elopement from a professional
  • Accidental drowning accounts for 71% of lethal outcomes, followed by traffic injuries at 18%
  • Other dangers include dehydration; heat stroke; hypothermia; falls; physical restraint; encounters with strangers
  • Accidental drowning accounted for 91% total U.S. deaths reported in children with autism due to wandering.

 

Resources

Download Factsheet

Autism and Visual Impairment

Epilepsy and Autism

Self-Regulation and Autism

National Asthma and Allergy Awareness Month

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Date: May 1- May 30, 2022

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 sis 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

Ways to bring awareness:

Educate yourself by downloading a factsheet: AAFA Asthma Facts and Figures April 2021

Use tools to educate family, friends, school and work

Follow on organizations on social media

Order a T-shirt

raise money and donate to a nonprofit organization