• Frequency: 
  Rare Neurodevelopmental genetic disorder affecting less than 300 world wide.
• What is it?
  ADNP syndrome is a condition that causes a wide variety of signs and symptoms. Its hallmark features are intellectual disability and autism spectrum disorder, which is characterized by impaired communication and social interaction. Affected individuals also have distinctive facial features and abnormalities of multiple body systems.
  
• Patient Challenges:
  Mild to severe intellectual disability
  Delayed development of speech and motor skills such as sitting and walking
  Some affected individuals are never able to speak
  Exhibit features typical of autism spectrum disorder
  Repetitive behaviors
  Difficulty with social interactions
  Mood disorders or behavioral problems, such as anxiety, temper tantrums, attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder, or sleep problems
  
• Parent Challenges
  Sleep problems
  Parent challenges related to the Autism Spectrum Disorder
  Weak muscle tone in child requiring extra care
  Digestive problems, constipation, vomiting, obesity, seizures, and heart abnormalities.
  

• Frequency: 
  Neurogenetic Disorder affecting 1 in 10,000 - 25,000 individuals interactions, obsessive interests, and repetitive behaviors.
• What is it?
  Complex genetic disorder primarily affecting the nervous system caused by the deletion of a chromosome or genetic mutation. Often accompanied by a happy, excitable demeanor and hyperactivity. Common symptoms include delayed development, intellectual disability, motor and balance issues, speech impairment, and in severe cases seizures.
  
• Patient Challenges:
  Difficulty sleeping
  Hyperactivity
  In severe cases, recurrent seizures
  Excessive chewing and mouthing behavior
  Frequent laughter and a happy, excitable nature
  Curvature of the spine
  
• Parent Challenges
  Provide consistency
  Create a safe environment conducive to convulsive movements
  Reward good behavior
  Manage seizures with medication and a safe environment at all times
  Develop proper communication techniques
  Provide physical and behavioral therapy
• Resources

• Frequency: 
  A serious developmental disorder that impairs the ability to communicate and interact. The range and severity of symptoms can vary widely. Common symptoms include difficulty with communication, difficulty with social interactions, obsessive interests, and repetitive behaviors.
• What is it?
  A serious developmental disorder that impairs the ability to communicate and interact. The range and severity of symptoms can vary widely. Common symptoms include difficulty with communication, difficulty with social interactions, obsessive interests, and repetitive behaviors.
• Patient Challenges:
  Night Wandering
  Compulsive behavior
  Impulsivity (playing vs sleeping)
  Self-harm (e.g. banging head on wall)
  Obsessive Interests
• Parent Challenges
  Provide consistency
  Create a home safety zone
  Visual cues often helpful
  Reward good behavior
  Understand hypersensitivities to light, sound, touch, taste, and smell
  Understand child’s triggers (i.e. what is stressful, frightening, calming, uncomfortable, enjoyable)
  Stick to a schedule

• Frequency: 
  Neurological Disorder affecting 1 in 1,500 - 4,000 individuals
  
• What is it?
  Group of disorders that affect a person's ability to move and to maintain balance and posture. The most common form is spastic cerebral palsy where there is damage in the motor cortex causing stiff and tight muscles.
  
• Patient Challenges:
  Prone to epilepsy
  Difficulty sleeping because of muscle spasms
  Uncontrolled or unpredictable movements
  Difficulty walking
  Difficulty balancing, moving, communicating, eating, and learning
  Hearing and/or vision impairment
  
• Parent Challenges
  Provide proper equipment to assist in movement and provide safety
  Help child exercise at home
  Serve healthy foods that can help strengthen bones and muscles
  Assist child in daily activities
  

• Resources
  The CHARGE Syndrome Second Edition includes comprehensive information on the physical, sensory, communicative and behavioral findings in CHARGE. Authors are all recognized experts in CHARGE, including many from the CHARGE Center at Cincinnati Children's Hospital Medical Center.
  

• Resources
  

• Frequency: 
  Genetic Disorder affecting 1 in 700 individuals
  
• What is it?
  A genetic disorder caused by an extra chromosome in each cell. Often characterized by distinct physical traits including low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Neurological development is often delayed.
  
• Patient Challenges:
  Higher risk for epilepsy
  Emotional problems including ADHD, anxiety, and/or depression
  Disrupted sleep from sleep apnea
  Hearing loss that often is dealt with by learning sign language
  Thyroid problems that can affect temperature and energy
  At risk for congenital heart disease
  Higher risk for infections
  Vision impairments including cataracts
  Low strength attributed to poor muscle tone
  
• Parent Challenges
  Create a safe environment conducive to convulsive movements
  Provide consistency
  Use pictures to make a daily schedule your child can see
  Create a daily routine
  Provide proper medication and assistance in activity changes
  

• Frequency: 
  Neurological Disorder affecting 1 in 2000 - 3000 individuals
  
• What is it?
  Neurological disorder where an excessive surge of electrical activity in the brain can cause a variety of symptoms. Two main types are focal seizures occurring in one small region of the brain and generalized seizures involving both hemispheres of the brain.
  
• Patient Challenges:
  Jerking movements
  Blinking
  Loss of muscle tone
  Stiffening of limbs
  
• Parent Challenges
  Create a safe environment conducive to convulsive movements
   Carefully manage and regulate medications
  Provide proper therapies
  

• Resources
  

• Frequency: 
  We’re not sure and we don’t have a reliable estimate. There are people who have not been diagnosed using the most sophisticated chromosomal testing or have not joined our organization and so we can’t count them. It is estimated that 1% of people with autism have Phelan-McDermid syndrome. That means that between 1/8,000-15,000 (including 22q13.3 deletions and SHANK3 gene variants) have PMS. However, this may be an underestimate since not all patients with PMS will present with autism.
  
• What is it?
  Phelan-McDermid syndrome (PMS), is also known as 22q13 Deletion syndrome. It is a genetic condition that is caused by a variance of the SHANK3 gene or a deletion (a missing piece) of genetic material that causes many different but related symptoms. The genetic changes that cause PMS vary from person to person and can occur randomly (de novo) or be inherited from a parent who carries a related genetic change. Because the genetic changes vary, the symptoms of PMS also vary and can cause a wide range of medical, intellectual, and behavioral challenges. 
  
• Patient Challenges:
  Intellectual disability of varying degrees
  Delayed or absent speech
  Symptoms of autism spectrum disorder
  Low muscle tone
  Motor delays
  Epilepsy
  
• Parent Challenges
  Create a safe environment conducive to convulsive movements
  Carefully manage and regulate medications
  Provide proper therapies
  

• Frequency: 
  Approximately 500 cases have been identified worldwide - neurogenetic disorder
  
• What is it?
  Condition characterized by intellectual disability and developmental delay, breathing problems, epilepsy, and distinctive facial features. They often have difficulty talking and exhibit many features of autistic spectrum disorders. It’s caused by genetic mutation essential to the development of the brain.
  
• Patient Challenges:
  Epilepsy common
  Little speech
  Hyperventilation and sleep apnea
  Delayed development of mental and motor skills
  
• Parent Challenges
  Create a safe environment conducive to seizures
  Reward good behavior
  Provide consistency
  Medication to prevent seizures, ease breathing and constipation
  Diet to better manage constipation and GI issues
  Physical, occupational and behavioral therapy
  

• Frequency: 
  Genetic disorder affecting 1 in 25,000 individuals
  
• What is it?
  A rare genetic disorder caused by a chromosome duplication in each cell. Common symptoms include weak muscle tone, swallowing difficulties, and delayed development. Many patients are born with heart defects and are more prone to diseases like sickle cell anemia and cancer.
  
• Patient Challenges:
  Hyperactivity or impulsive behaviors
  Sleep problems including sleep apnea, problems falling asleep, and staying asleep
  Difficulty with speech
  Difficulty with social interactions and communication
  
• Parent Challenges
  Create a safe environment conducive to convulsive movements
  Provide consistency
  Provide proper communication and behavioral therapy
  Regulation of diet and health
  Provide proper medication and assistance in daily activities
  

• Frequency: 
  Genetic disorder affecting 1 in 8,000 - 20,000 individuals
  
• What is it?
  Rare genetic disorder caused by deletion of a vital chromosome. It causes poor muscle tone, low levels of sex hormones, and a constant feeling of hunger. In most cases, the patient is at risk for severe obesity.
  
• Patient Challenges:
  Sleep disturbances
  High pain threshold
  Behavioral challenges that may include anxiety, OCD, skin picking, and uncontrollable emotions
  Obesity
  Short stature
  Poor motor skills
  Underdeveloped sex organs
  Mild intellectual and learning disabilities
  
• Parent Challenges
  Provide consistent and safe environments
  Regulate schedules
  Reward good behavior
  Implement positive behavior strategies
  Provide proper medications addressing issues
  Manage weight and eating
  

• Frequency: 
  Neurodevelopmental Disorder affecting 1 in 10,000 - 23,000 individuals, mostly female
  
• What is it?
  Rare genetic disease that causes developmental and nervous system problems. There are varying severities of symptoms, but common ones include loss of communication skills and reduced control of hand movements. Motor problems often increase with age while interaction and communication often improve.
  
• Patient Challenges:
  Compulsive movements
  Balance problems
  Seizures
  Loss of speech and hand movements
  Breathing problems
  Intellectual disability
  
• Parent Challenges
  Create a safe environment conducive to compulsive movements
  Reward good behavior
  Help child walk
  Reposition them for comfort
  Control drooling problems
  Manage medications
  

• Frequency: 
  Neurobehavioral Disorder affecting 1 in 25,000 individuals
  
• What is it?
  A developmental disorder caused by a deletion of genetic material on part of a chromosome that affects intellectual ability, speech and language, and behavior. Common symptoms include mild to moderate intellectual disability, delayed speech and motor skills, distinctive facial features, sleep disturbances, and behavioral problems.
  
• Patient Challenges:
  Chronic sleep disturbances
  Frequent temper tantrums and outbursts
  Self-injury
  Excessive daytime sleepiness / sleep debt
  Negative reactions to change in activities
  Difficulty paying attention
  Repetitive behaviors like arm hugging, hand squeezing, body rocking, etc.
  
• Parent Challenges
  Create a familiar safe environment
  Provide sensory activities to regular child’s responses to sensory stimuli
  Reward good behavior (fidget folder - communication pack)
  Work on facilitating appropriate and supportive social interactions
  Provide a total communication program that often involves sign language
• Resources
  
  

ACEing Autism is on a mission for children with autism to grow, develop and benefit from social connections and fitness through affordable tennis programming, uniquely serving individual needs while filling a national void for this growing and worthy population. ACEing Autism is a 501(c) 3 nonprofit organization. 

Providing assistance for children with autism of military families.

Official charity of the United States Air Force sponsoring programs that improve quality of life for Airmen and their families.

Vacations for adults and families living with Autism, Down Syndrome, and other related disabilities.

Non–profit organization that grants wishes to children/teens ages 0-18 who are struggling due to emotional, physical or financial issues.

The Children’s Home of Pittsburgh, established in 1893, is an independent, non-profit licensed organization whose purpose is to promote the health and well-being of infants and children through services which establish and strengthen the family.

For families in the greater Western Pennsylvania region, lots of summer camp programs are opening again for the 2021 season. In this PDF, browse summer camp openings ranging from Camp SPEAK, Camp ROCK, Class ESY, and UPMC/Merck Summer Treatment Programs, there truly is something for everyone!

Created by parents of a tube-fed child, the FreeArm Tube Feeding Assistant holds gravity and pump feeds. The FreeArm lends a hand at the hospital, home, and on-the-go by clamping to surfaces such as tables, cribs, strollers, and more! With the FreeArm's bendable arm, you can take the guesswork out of how high to hold the gravity syringe and keep lines free from kinks.

Find destinations using specific accessibility categories and features.

Give Kids The World Village is an 89-acre, whimsical nonprofit resort in Kissimmee, Florida, that provides week-long, cost-free wish vacations to critically ill children and their families from around the world who want to visit Central Florida.

Custom covers for central lines, ostomy pouches, feeding tubes and more.

Jake’s Help From Heaven, founded in 2011, is a non-profit foundation dedicated to supporting individuals with multiple medical challenges and disabilities. Countless challenges occur in caring for medically fragile, special needs individuals. Our goal is to assist individuals affected by debilitating illnesses.

Non–profit organization that seeks to empower and assist children with disabilities by donating home building material and equipment.

Granting wishes of children with life-threatening medical conditions.

The world's first Ultra-Accessible™, family fun park located in San Antonio, Texas.

We deliver happiness to seriously ill children and their families at more than 800 children’s hospitals and health care facilities in the US. Our state-of-the-art programs like Starlight Virtual Reality, Starlight Hospital Wear, and Starlight Gaming entertain, distract, and inspire hospitalized kids. Since 1982, Starlight has brought smiles to more than 17 million seriously ill children and their families. 

The Suite Dreams Project is a unique and innovative program of the General Sports Foundation, a Michigan non-profit organization. Our focus is to serve children and families in low and moderate income, urban and rural areas by transforming their bedrooms into beautiful healing spaces where they can rest and recover. The Suite Dreams Project utilizes the assistance of designers and volunteers to create these unique environments complete with healing elements specific to the needs of each sick child. We assist in obtaining any furniture, materials and equipment necessary to create the “suite” of each child’s dream.

Sunshine Foundation’s sole purpose is to answer the dreams of chronically ill, seriously ill, physically challenged and abused children ages three to eighteen, whose families cannot fulfill their requests due to financial strain that the child’s illness may cause.

If you choose to buy or crowdfund from us using MobilityFunder®️, I want you, your child, or someone you care about to feel the way I do when using the right equipment that makes a difference. -Andy Huesing, Founder / Director

501c3 non-profit aligning resources to assist with medical equipment and provide support for promising therapies with the potential to produce significant recovery gains from the life altering effects of spinal cord injury (SCI).

501c3 non-profit aligning resources to assist with medical equipment and provide support for promising therapies with the potential to produce significant recovery gains from the life altering effects of spinal cord injury (SCI).

Reagan’s Journey Inc. exists to MAKE LIFE BETTER for children with special needs through events, lending clothset, and raising awareness and improving our communities.