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ABOUT ANGELMAN SYNDROME

Inspired by Logan's real-life journey, this page shares information about Angelman syndrome, communication, caregiving, and the experiences that have shaped our family.

Welcome to Logan's
 Angelman Syndrome Journey

Every person with Angelman syndrome has a unique story, and this is ours.

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Logan is a joyful, caring, and determined young man who lives with Angelman syndrome. While his journey has included developmental delays, medical challenges, and learning new ways to communicate, it has also been filled with laughter, love, unforgettable adventures, and countless reasons to smile. 

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Through this website we invite you to walk alongside us as we share what life with Angelman syndrome really looks like - from everyday routines and doctor appointments to therapies, community adventures, AAC communication, and the special moments that make Logan who he is.

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Our hope is that Logan's story helps others better understand Angelman syndrome, encourages families who may be on a similar journey, and reminds everyone that communication comes in many forms.

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            Welcome to our journey. We're so glad you're here.

What is Angelman Syndrome?

Logan using AAC hi.jfif

Quick Facts

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*Rare genetic condition

*Communication comes in many forms

*Joyful personalities and frequent smiles

*Every individual has unique abilities and challenges

*Lifelong support and caregiving

*AAC can open the door to communication

Angelman syndrome is a rare condition that affects the nervous system and development. It is caused by a loss of function of the UBE3A gene on chromosome 15. Angelman syndrome affects approximately 1 in 15,000 people worldwide. Individuals with Angelman syndrome may experience developmental delays, limited or no speech, movement and balance challenges, seizures, and learning differences. With the right support, therapies, and communication tools, people with Angelman syndrome can live a joyful, meaningful life.

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I love ending on hope.

Common Characteristics of Angelman syndrome

Behavioral & Neurological

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  • Joyful personality with frequent smiles and laughter

  • Little or no speech

  • Movement and balance challenges (ataxia)

  • Hyperactivity or short attention span

  • Sleep difficulties

  • Seizures (common)

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Physical Characteristics

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  • Developmental delays

  • Feeding difficulties (especially in infancy)

  • Small head size in some individuals

  • Wide mouth and widely spaced teeth (may be present)

  • Light hair, skin, or eye color in some individuals

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Communication

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  • Most individuals understand much more than they can express

  • Communication comes in many for, including:                                                

    •   AAC devices 

    •   ​Communication boards

    •   Sign Language

    •   Gestures

    •   Eye gaze

    •   Facial expressions

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Gene.PNG

Remember 

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Every person with Angelman syndrome is unique. Not everyone will have every characteristic, and every individual has their own strengths, personality, and abilities.

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Shiny golden star
Shiny golden star

Every voice matters.

Communication is more than talking.

Every person deserves to be heard, understood, and included.

Communication Comes in Many Forms

Communication comes in many forms

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Every individual with Angelman syndrome communicates differently. Many people understand much more than they can express. Some communicate with speech-generating devices (AAC), while others use gestures, facial expressions, eye gaze, sounds, communication boards, sign language, or picture symbols. Every way of communicating is meaningful. 

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  • Speech-generating devices (AAC)

  • Communication boards

  • Picture symbols

  • Sign language

  • Gestures

  • Facial expressions

  • Eye gaze

  • Sounds and vocalizations

  • Smiles and laughter

How Can You Support Someone with Angelman Syndrome?

Be patient
Celebrate abilites

Communication may take extra time. Give individuals time to respond.

Focus on strengths and accomplishments rather than limitiations.

Respect all forms of communication.
Keep Learning

AAC devices, gestures, eye gaze, facial expressions, and sign language are all meaningful ways to communicate.

The more people understand Angelman syndrome, the more inclusive our communities become.

Include everyone
Presume competence

Invite individuals with Angelman syndrome to participate in family, school, church, community, and recreational activities.

Many individuals understand far more than they can express. Always speak respectfully and include them in conversations.

A little patience, understanding, and inclusion can make a lifetime of difference. Every person deserves the opportunity to communicate, learn, belong, and be loved.

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