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Recurrence Risks | Research | Researchers | Residential Placement | Resources | Respite Workers | Routines

 

Recurrence Risks

Family genetics diagram

Family Genetics

http://www.peds.ufl.edu/divisions/genetics/programs/angelman_syndrome/genetic_counseling.htm

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Research

Go to the following Angelman Syndrome Foundation website links:

Summaries: http://www.angelman.org/research/research-summaries/

Publications: http://www.angelman.org/research/research-publications/ 

ASF research funding: http://www.angelman.org/research/asf-funded-research

To participate in a research study:  http://www.angelman.org/research/participate-in-research-studies/

Also, visit the PubMed site:  http://www.ncbi.nlm.nih.gov/pubmed/

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Researchers

Our deepest gratitude goes to past, current and future researchers!

ASF Researcher Spotlight:  http://www.angelman.org/research/asf-researcher-spotlight/

ASF Research Summaries:  http://www.angelman.org/research/research-summaries/

ASF Scientific Advisory Committee:  http://www.angelman.org/about/scientific-advisory-committee/

Dr. Kenneth Allen

Dr. Keith Allen
Monroe Meyer Institute University of Nebraska Medical Center Omaha, NE
(Sleep issues in AS)

Dr. Arthur Beaudet

Dr. Arthur Beaudet
Baylor College of Medicine Houston, Texas
ASF Scientific Advisory Committee
Discovered that the cause of AS is a mutation in the UBE3A gene
(A rigorous test in the mouse of whether increased DNA methylation can activate neuronal expression of the paternal UBE3A allele; A Therapeutic Trial of Folate and Betaine in Angelman Syndrome)

Dr. Claudia Benton

Dr. Claudia Benton Baylor College of Medicine Houston, Texas
 (deceased)
(The spectrum of mutations in UBE3A causing Angelman Syndrome)

Terry Jo Bichell  RN, CNM, MPH
Vanderbilt University Nashville, Tennessee
(Alphabet Therapy)

Ethan Bier

Dr. Ethan Bier
University of California, San Diego La Jolla, CA
(Molecular Genetic Analysis of the Drosophila Angelman Syndrome Gene)

Lynne Bird

Dr. Lynne Bird
Rady Children’s Hospital  San Diego, CA
AS Natural History Study
(Levodopa/Carbidopa Treatment of Children with Angelman Syndrome; Folic Acid/Betaine Clinical Study; Folic Acid/Betaine Clinical Study)

Margaret Bradley

Dr. Margaret Bradley
University of Florida  Gainesville, Florida
(Brain potentials of cognition and emotion in individuals with Angelman Syndrome)

Stephen Calculator

Dr. Stephen Calculator
University of New Hampshire Durham, NH
ASF Scientific Advisory Committee
(Communication/Educational programs for students with Angelman Syndrome in inclusive classrooms: A look at best practices; Efficacy of Enhanced Natural Gestures for Young  Children with Angelman Syndrome; Use of Enhanced Natural Gestures and Angelman Syndrome)

Stormy Chamberlin

Dr. Stormy Chamberlin
University of Connecticut  Farmington, CT
ASF Scientific Advisory Committee
(Studying the neuron-specific regulation of the UBE3A antisense transcript)

Aaron Ciechanover

Dr. Aaron Ciechanover  Nobel Laureate
Technion-Israel Institute of Technology  Haifa, Israel
(The Ubiquitin Ligase E6-AP Targets the Polycomb Repressive Complex Proteins Ring1B and Bmi1 to Ubiquitination and Subsequent degradation: Structural and functional Implications and Possible Relationship to the Pathogenesis of Angelman Syndrome)

Somas Das

Dr. Somas Das
University of Chicago Chicago, IL
(Molecular Analysis of the Angelman Syndrome: The role of UBE3A deletions)

Dr. Tim Delorey  (no photo)
Molecular Research Institute  Mountain View, CA
(GABA-A receptor beta 3 submit knockout mice; Parental imprinting and Angelman Syndrome)

Scott Dindot

Dr. Scott Dindot
Texas A&M University College Station, Texas
(Determining the Role of the E6-AP Isoforms in Synaptic Maturation; Elucidating the mechanisms  regulating genomic imprinting of Ube3a in neurons, examining the efficacy of gene therapy in Angelman syndrome mice, and examining the neurological function of the human UBE3A isoforms.)

Michael Ehlers

Dr. Michael Ehlers
Duke University Medical Center Durham North Carolina
ASF Scientific Advisory Committee
(
Restoration of Neocortical Plasticity In a Mouse Model of Angelman Syndrome; UBE3A and Altered Neuronal Trafficking in Angelman Syndrome)

Ype Elgersma

Dr. Ype Elgersma
Erasmus University Medical Center  Rotterdam, Netherlands
(Are the neurological symptoms of Angelman Syndrome reversible? An inducible mouse model for Angelman Syndrome; Understanding how motor deficits in Angelman Syndrome arise, and whether the  (no phootneurological deficits are reversible.)

Benjamin Enav

Dr. Benjamin Enav
University of California, Los Angeles,  Los Angeles, California
(A Prospective Pilot Study of Gastric Myolectrical Activity in Children with Angelman Syndrome)

Craig Erickson

Dr. Craig Erickson
Cincinnati Children’s Hospital Medical Center  Cincinnati, OH
(Study to determine if acamprosate, a drug that is approved by the Food and Drug Administration for the treatment of alcoholism in adults and works to correct imbalances in excitatory and inhibitory signaling in the brain, is a viable treatment option in Angelman syndrome (AS). 

Dr. Fen-Ben Gao   (no photo)
J. David Gladstone Institute  San Francisco, CA
(Genetic dissection of the Molecular Pathways Underlying the Pathogenesis of Angelman Syndrome)

Michael Greenberg

Dr. Michael Greenberg
President and Fellows of Harvard College Harvard Medical School   Boston, MA
ASF Scientific Advisory Committee
(Investigation of UBE3A in the role of Synapse Development)

Dr. Peter Hammond  (no photo)
UCL Eastman Dental Institute, London UK
Facial phenotype-genotype correlations in Angelman Syndrome

Dan Harvey

Dr. Dan Harvey
Chief operating officer of Dart NeuroScience LLC
ASF Chair of the Scientific Committee
father of a son with Angelman Syndrome

Peter Howley

Dr. Peter Howley
Harvard Medical School  Boston, MA
(Identification of UBE3A Ligase Substrates)

Dr. Terry Hutchinson (no photo)
University of California San Francisco San Francisco, CA
Neurologist and early “pioneer” of seizure control in AS patients

Yong-Hui Jiang

Dr. Yong-Hui Jiang
Baylor College of Medicine  Houston, Texas
Duke University Medical Center Durham, NC
(Novel UBE3A Isoform and Angelman Syndrome; Explore epigenetic therapy of using  histone deacetylase inhibitors in the AS mouse model; Explore the therapeutic potential of levodopa to treat AS in mouse model; Dissecting the roles of UBE3A in synaptic plasticity by analyzing synaptic function at the single cell level and utilizing ‘Network Analysis Proteomics’ strategy)

Steven Katz

Dr. Steven Katz
Physician and father of a son with Angelman Sydrome
ASF Scientific Advisory Committee

Eric Klan

Dr. Eric Klan
New York University New York, NY
(Therapeutic Targets to Treat Cognitive Deficits in Angelman Syndrome; Neuregulin-dependent Alterations in Glutamate Receptor Function and LTP in Angelman Syndrome Model Mice)

Benjamin Kuhlman

Dr. Benjamin Kuhlman
University of North Carolina Chapel Hill, North Carolina
(Redesigning the Ubiquitin Pathway to Identify the Substrates of E6AP)

Lalande, Mark

Dr. Mark Lalande
University of Connecticut School of Medicine Department of Genetics
ASF Scientific Advisory Committee
Parental imprinting and Angelman syndrome; Identify molecules that can unsilence the paternal Ube3a allele in a mouse model.)

Eric Levine

Dr. Eric Levine
University of Connecticut Health Center Farmington, CT                                (Pathophysiology of Autism Spectrum Disorders Using Human Stem Cell Models)

John Lisman

Dr. John Lisman
Brandeis University  Boston, MA
(Better understand how CaMKII activity is mediated by a group of regulatory proteins known as phosphatases.  AS treatment strategies involving CaMKII activation via phosphatase-catalyzed dephosphorylation may result from such studies.)

Angela Mabb

Dr. Angela Mabb
UNC at Chapel Hill, Chapel Hill, NC
Epigenetic Regulation of Ube3a by Topoisomerases

Seth Margolis

Dr. Seth Margolis
Johns Hopkins Medicine
Mechanisms of Angelman Syndrome: Insights from UBE3A Substrate

John Marshall

Dr. John Marshall
Brown University  Providence, RI
(Rescue of Angelman Syndrome Learning Deficits by an Investigational New Drug; How receptors play key roles in neuronal communication, the study of which is having positive implications and revealing important discoveries about neuronal communication in Angelman syndrome.)

Dr. Linyan Meng (no photo)
Baylor College of Medicine, Houston, Texas
(Studies social skills training for individuals with Autism and other pervasive developmental disorders)

Kylee Miller (no photo)
Investigating Anxiety in Individuals with Angelman Syndrome   

Mark Nespeca

Dr. Mark Nespeca
Rady Children’s Hospital, San Diego, CA
ASF Scientific Advisory Committee, AS Natural History Study

Chris Oliver

Dr. Chris Oliver
University of Birmingham Edgbaston, Birmingham, United Kingdom
(Establishing the basic principles of effective intervention for difficult behavior in AS)

Dr. Richard Olsen  (no photo)
Mayo Clinic, Rochester, MN
(GABA-A receptor beta 3 submit knockout mice; GABA beta3 Deficient Mice)

Gentry Patrick

Dr. Gentry Patrick
University of California, San Diego  La Jolla, CA
(Elucidating the function of the E6AP ligase at mammalian CNS synapses)

Sarika Peters

Dr. Sarika Peters
Baylor College of Medicine,  Houston, Texas
(Use of Conventional and Complementary and Alternative Treatments for Problem Behaviors in  Angelman Syndrome; Neuroimaging Studies in Angelman Syndrome)

Benjamin Philpot

Dr. Ben Philpot
University of North Carolina School of Medicine,  Chapel Hill, North Carolina
ASF Scientific Advisory Committee (Novel therapeutics for AS by manipulating UBE3A expression; Restoration of Neocortical Plasticity In a Mouse Model of Angelman Syndrome; Importance of UBE3A for Experience-Dependent Modifications of Cortical Synapses)

Fred Pritzker

Mr. Fred Pritzker
Attorney, ASF Scientific Advisory Committee

Dr. Lowell Rayburn  (no photo)
Carolinas Medical Center,  Charlotte, NC
(Effect of premature truncation of the UBE3A antisense transcript on UBE3A imprinted expression)

Dr. Aaron Razin   (no photo)
The Hebrew University, Hadassah Medical School
Control of monoallelic expression of the Angelman gene UBE3A

Lawrence Reiter

Dr. Lawrence Reiter
The University of Tennessee, Memphis, TN
(A combined molecular and electrophysiological approach to understanding cerebellar defects in AS)

Bryan Roth

Dr. Bryan Roth
University of North Carolina School of Medicine, Chapel Hill, North Carolina
(Identify molecules that can unsilence the paternal Ube3a allele in a mouse model.)

David Segal

Dr. David Segal
University of California Davis,  Davis, CA
(Towards Gene Therapy for Angelman Syndrome Using Artificial Transcription Factors)

Jason Shepherd

Dr. Jason Shepherd
University of Utah, Salt Lake City, UT
(Investigating the role of Arc in the cognitive dysfunction associated with AS)

Dr. Jill Clayton-Smith  (no photo)
St. Mary’s Hospital,  Manchester United Kingdom
(History & Discovery: Dr. Harry Angelman’s Observations; Special Issues of Adolescence  and The Transition to Adulthood)

Dr. Michael Stryker (no photo)
University of California San Francisco School of Medicine, San Francisco, California
(The role of UBE3A in development of excitatory-inhibatory balance in neocortex)

Dr. Jane Summers

Dr. Jane Summers
McMaster Children’s Hospital, Hamilton, Ontario Canada
ASF Scientific Advisory Committee  (Developing an assessment battery to study learning, memory and motor performance in children with AS; Evaluating the effectiveness of ABA-based approaches for teaching functional skills to children with AS)

Wen Hann Tan

Dr. Wen-Hann Tan
Boston site principal investigator of an Angelman Syndrome: Natural History Study.
ASF Scientific Advisory Committee

Ronald Thibert

Dr. Ronald Thibert
Massachusetts General Hospital, Boston, Massachusetts
ASF Scientific Advisory Committee  (The Significance of EEG Findings in Angelman Syndrome;  Low Glycemic Index Therapy for the Treatment of Epilepsy in Angelman Syndrome
)

Elizabeth Thiele

Dr. Elizabeth Thiele
Massachusetts General Hospital for Children, Boston, MA
ASF Scientific Advisory Committee  (AS Seizure Survey; establishment of a ketogenic diet program at the Massachusetts General Hospital; worked on improved dietary therapies for epilepsy, including Low Glycemic Index Treatment.)

Coral Thompson

Coral Thompson
Researcher and Mother of a son with Angelman Syndrome
ASF Scientific Board

Dr. Joseph Wagstaff

Dr. Joe Wagstaff
Carolinas Medical Center,  Charlotte, NC  (deceased)
(Discovered that the cause of AS is a mutation in the UBE3A gene; Control of monoallelic  expression of the Angelman gene UBE3A; Role of the UBE3A Gene Product in Brain Protein  Metabolism; Melatonin and Sleep in Angelman Syndrome)

Dr. Nicolay Walz
Cincinnati Children’s Hospital,  Cincinnati, OH
(Sleep Patterns and Autistic Symptomology in Angelman Syndrome: Further Delineation of the Behavioral Phenotype; Behavioral Aspects of Angelman Syndrome)

Edwin Weeber

Dr. Edwin Weeber
University of South Florida  Tampa, Florida
(Identifying Potential Therapeutic Strategies for the Treatment of Angelman Syndrome; Therapeutic effectiveness of levodopa in the treatment of seizures and motor defects using the Angelman Syndrome mouse model)

Sharon Weil Chalker

Sharon Weil- Chalker
Science Officer
Foundation for Angelman Therapeutics

Dr. Charles Williams

Dr. Charles Williams
University of Florida College of Medicine, Gainesville, Florida
Affectionately called “The Father of Angelman Syndrome” (Audrey and Harry Angelman are the “Royalty of Angelman Syndrome”)

Mark Zylka

Dr. Mark Zylka
University of North Carolina at Chapel Hill,  Chapel Hill, NC
(Evaluate how each known mutation affects UBE3A function.  Furthermore, it has the potential to more accurately predict whether new mutations in UBE3A are benign or cause AS.  Such studies could lead to therapeutics that stabilize UBE3A in a subset of patients with AS; Identify molecules that can unsilence the paternal Ube3a allele in a mouse model.)

Who’s Who of the Angelman Syndrome Foundation:

Eileen Braun
Eileen Braun
Executive  Director, Angelman Syndrome Foundation

Kitty MurphyKitty Murphy
Special Events Coordinator, Angelman Syndrome Foundation

 

 

 

Who’s Who of Researchers:  2014 Scientific Symposium

The Angelman Syndrome Foundation (ASF) and the Dup15q Alliance (DA), co-hosted a joint scientific symposium, “Two Sides of a Coin: Deletions and Duplications on 15q”, on August 14-16 in Cambridge, MA. As with past ASF and DA meetings, the conference brought together scientists and clinicians studying all aspects of these syndromes. Given the close molecular relationship between Angelman syndrome and Dup15q syndrome, an additional goal of the symposium was to feature research and foster discussion that may lead to mutually productive collaboration between professionals whose focus was hitherto restricted to one syndrome or the other. As always it is hoped that the discussions will advance understanding and treatment development for these syndromes, and for autism spectrum disorders in general.

Dr. Richard Mooney
Birdsong:  A System for Analyzing How Learning-Related Genes Affect Neural Circuits and Behavior

Dr. Scott Dindot
Making Sense and Antisense of Ube3a in the Brain

Dr. Jill Silverman
Therapeutic Development in Mouse Models of Neurodevelopmental Disorders

Dr. Ugo Mayor
Using Animal Models to Elucidate the Molecular Mechanisms Regulated by UBE3A and Ubiquitin

Dr. Ype Elgersma
Understanding the Molecular Mechanisms Underlying Angelman Syndrome

Dr. Shafali Spurling Jeste
Autism and Related Neurodevelopmental Disorders in Dup15q Syndrome: Can Clinical Profiles Guide Treatment Targets

Dr. Orrin Devinsky
Efficacy and Safety of Epidiolex (Cannabidiol) in Children and Young Adults with Treatment-Resistant Epilepsy: Preliminary

Data from an Expanded Access Program

Dr. Connie Kasari
Engaging Children to Improve Social-Communication Skills: Developmental Implications for Dup15q

Dr. Stephen Moss
Examining the Role that Modifications in the Phosphorylation of the GABAAR Beta3 Subunit Play in the Pathophysiology of Autism Spectrum Disorders

Dr. Ron Thibert
Epilepsy in Angelman Syndrome and 15q Duplication Syndrome

Dr. Orrin Devinsky
Efficacy and Safety of Epidiolex (Cannabidiol) in Children and Young Adults with Treatment-Resistant Epilepsy: Preliminary Data from an Expanded Access Program

Dr. Lawrence Reiter
Significant Transcriptional Changes in 15q Duplication but not Angelman Syndrome Deletion Dental Pulp Stem Cell Derived Neurons

Dr. Stormy Chamberlain
Induced Pluripotent Stem Cell Models of Angelman  and Dup15q Syndromes

Dr. Eric Levine
Pathophysiology of Autism Spectrum Disorders Using Human Stem Cell Models              

Dr. Janine LaSalle

Methylome and Synaptic Gene Impacts of an Organic Pollutant in Dup15q Syndrome 

Dr. T. Grant
Belgard Congruent Changes in Cortical Gene Expression in Duplication 15q Syndrome and Idiopathic Autism

Olena Marchenko
Dendritic Spine Morphologenesis in Neurons derived from Neurotypical and Dup15q iPS

Matthew Lollar
Investigating the Neuronal Circuitry Underlying Behaviors Associated with Autism Spectrum Disorders Using Targeted Gene Expression of UBE3A in Drosophila

Kylee Miller
Investigating Anxiety in Individuals with Angelman Syndrome

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RESIDENTIAL PLACEMENT

We kept our daughter at home until she was about twenty-one years of age. Deciding on group home placement was the most difficult decision we ever made. At that age she was not sleeping at night and some of her behaviors had gotten worse. Around that time we read an article written by a doctor who had a special needs child. In the article he explained that after his wife’s death, he had a very hard time caring for their son. His son was now up in his forties and the doctor was close to seventy. He said it was a very hard adjustment for both of them after his wife passed away. He then mentioned something that helped us make the decision with a better conscience. He stated that he wished he and his wife had been able to ease their son into residential placement sooner because their son would have gotten to know the program better and vice versa. He went on to write that he and his wife would have known they weren’t abandoning their son because they would still be there to monitor it all and help him to adapt.  They would still see their son as often as they wanted. His reflections helped us in this process and now our daughter has been in a group home now for about ten years. She has her own room with other housemates. We pick her up weekly for outings, if not more. We can say with confidence that it was the best decision we could make for her as well as for us as we all grow older 🙂
Linda Cox

When Tip was thirty years old we had an opportunity to place him with a residential program and we took advantage of that. Though he is two hours from home, we are able to bring him to our/his house whenever we want. It is still a challenge to take care of him, but he moves about the house as if he’s never left. We feel blessed to be able to bring him home, cut his hair and sit with him on the porch. In the last twelve years we have learned how best to advocate for him and we are still learning. This was the right decision for us.
Jane Lippard, Travelers Rest, SC  angel Tipton Charles Hudson,  age 43

***Appeared in the 1999 edition, Angelman Syndrome from A to Z.

Thoughts of the future can cause a great deal of stress for parents, siblings, and other family members of individuals with Angelman Syndrome. Fears about where the child will live, who will care for him or her, and quality-of-life issues are common. It is never too early to think about and begin planning for the time when the angel might move out of the home. This time is different for all families and each family must choose what is right for them. It cannot be stressed enough that the transition process from the angel’s home to residential placement, no matter what the age of the person, should involve the entire family. Encourage questions from siblings, grandparents, and other family members involved with the angel. Take siblings to visit the new residence so that they will know where their brother or sister will be living.

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RESOURCES

The National Association of Child Development has been our family’s most important resource for many years. We deeply appreciate NACD’s invaluable perspectives about what we can do at home to help Carly grow to her potential, whatever that may be. They have helped us with sensory issues, mobility, nutrition, seizures, sleep, and oral motor and communication needs. They are our main go-to when we have questions or want to be prepared for doctor appointments. They have helped us understand how to view Carly’s challenges holistically, considering the interplay between many factors. They help us address underlying issues rather than just treat symptoms. They help us maintain focus and healthy balance in our home and they show great respect for our family’s goals and values.  Investing in Carly’s health and well-being has taken much physical, mental and emotional energy. I want the best for all of my children.  Sometimes we have had to be persistent and patient for long years before recognizing the full reward of those efforts. Tremendous blessings continue to unfold and we’re so grateful!
Lisa Jamieson  Minneapolis  angel Carly, age 16

We received many services through the local Children’s Hospital.
Mindye James, Newport News, VA  angel Daniel James, age 28 Deletion +

Here is a link to resources included in the international online magazine, Angelman Today.
http://www.angelmantoday.com/resources/

****Here are several links to the ASF website.  The links include numerous resources for specific areas.  The titles appear at the end of the website address. These links are also included within various A to Z topics.

Educational Resources

Family Resource Team

Federal Resources

State Resources

Professional Resources

Seizure Resources

Therapy Resources

Travel Resources

Household Resources

Recreational Resources

Support Resources

http://helpmeflyinc.wix.com/helpmeflyinc
I got the idea to start Help Me Fly Inc. from hearing other people’s struggles. My son has Angelman Syndrome and all too often I hear about other families struggling with their insurance companies to get items that without their approval we could never get. Some of these items can really make a huge change in these peoples lives. I just always read their stories and wish there was something I could do to help them. So with that I started doing research on how to start a non-profit and started Help Me Fly Inc.

My Goal for Help Me Fly Inc. is to help families obtain these items that are too expensive to pay out of pocket for and that insurance does not cover.  These items can be anything from wheelchair ramps, enclosed beds, or home improvements that will help families in their everyday lives. These are just examples and are not limited to what was mentioned. If you need help please contact us as we would love to help.
Lana Kruge

ASF Family Resource Team Members:

http://www.angelman.org/resources-education/family-resource-team/

Michelle Harvey

 

Michelle Harvey  IEP Issues, IEP Bank, Educational Issues, Advocacy

 

 

 

Lizzie Sordia

 

Lizzie Sordia  Supplies, Durable Medical Goods, Products, Helpful Daily Living Products and Services)

 

 

 

Dr. Eric Wright

 

Dr. Eric Wright Resources and Services specific to State Waivers, Government Assistance, Insurance, and Advocacy on behalf of Individuals with AS

 

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RESPITE WORKERS

We have had many respite workers over the years, but the best ones seem to be on their way to more education and better pay.
Susan Pike

I’ve found great care providers by hiring Certified Nurse Assistants for elderly homes, or students who are studying special education. They are usually patient and kind.
Christine and Giovanni Rompato  Logan, Utah  angel Chiara, age 5

***Appeared in the 1999 edition, Angelman Syndrome from A to Z.

Respite is a crucial service to families with a child with a disability. Caring for a child with Angelman Syndrome can be difficult. Respite care is a service that gives families a temporary break from the day-to-day responsibilities and stresses of raising a child with Angelman Syndrome. Respite care can provide families with planned free time to complete essential tasks, socialize or just relax, and that can mean a great deal to the parent, child, and other family members. Respite care can take many forms and includes in home (several hours a day or week) and out of home assistance (a place where the child can go for the weekend or summer camp).

For years I refused to even think about someone coming into my home to care for my daughter until I realized that I really needed help. Respite gives me time for me, my husband and my other children.

We looked for people who have some special education background. We train them at our home in our angel’s environment teach them how to help him improve. We evaluate them with Mario’s behavior when he sees them. We are very careful to check his body if he doesn’t have any bruises or cuts when they leave.
Brisia Barba  Chihuahua, México, angel Mario, age 9

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ROUTINES

Keep them involved in every day chores. For example, have your angel put his/her plate in the sink. Daily routine is important.
Fiona

Find activities in the community your child enjoys.  Develop a routine to take your child into the community.  For example, go daily or weekly to a park, or go on short visits to a store or a recreation center.  Most public places will try to accommodate your angel if they know your expectations.
Donna Manhart Rowlett, TX  angel Douglas Joseph Manhart, age 25

Begin any kind of daily living routine early and keep practicing.  It may take years before your child can do the skill independently, but it is worth it.  This includes hand over hand use of a spoon, pulling pants up and down when toileting, and bathing. I began putting deodorant on my child long before she really needed it so that she would be used to the sensation by the time it was truly important.
Laura and Jeff Harris  Ozark, MO  angel Leah,  age 16

Establishing a routine early on has helped calm my son Coby. We dim the lights and turn down the television at about the same time every night. We then put him into bed at almost the same time and lay with him until he falls asleep. His older siblings also know to use gentle voices at night.
Maria Leon Guerrero

We try to keep to the same routine at home as much as possible and this helps with language understanding. We can say “It’s time for a bath!” and our daughter knows what that means.   For eating, our daughter finally has the hang of using a fork. We tried for a long time with a child fork, and then we realized a sharper adult fork actually made it easier for her to stab the food. Our occupational therapist experimented with a bowl that was held at an angle so that our daughter could stab the food more easily.
Christine and Giovanni Rompato Logan, Utah  angel Chiara,  age 5

Routine is essential for our Angelman child. It assists with normalizing his wake/sleep cycle and keeps his behaviors to a minimum if he knows what to expect as the day progresses.
Terri Spielman

We are big on routines. It worked for our typical child, so we continued with it. We are not sure if we are just lucky or if it is our routines that help our angel have a pretty normal sleep pattern.
Leah Boice  Ellington, CT  Emily, age 7 Del +

I believe in being consistent with how to react to things, but I don’t believe in routines for mealtime or bedtime.  The reality in life is that you are not always able to stick to a routine.
Carol and Rick  Kaczander  Oak Park, MI  angel Rob, age 35

My angel loves to help out with chores around the house. I usually give her a dust rag or paper towel and let her help me with chores.  She loves it and I get a lot done!
Steve and Lee Ann Beasley, Burlington, KY  angel Ella, age 9 UPD 

Routine. Routine. Routine. I have found that if Kade stays on a routine, all other areas improve.
Hollie Cook

Routine, routine, routine! My son benefits greatly from having a routine!
Danielle and John Ridge  Waynesboro, PA  angel Alex, age 15

Daniel loves to help.  He carries in packages, empties the dishwasher and if you watch your toes, he will vacuum!
Mindye James, Newport News, VA  angel Daniel James, age 28 Deletion +

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