To see a complete schedule with times and locations, please go here.

Please note that all children must be registered in Childcare in order to participate in the Children's Activities.  The Childcare fee is included in your registration fee.

Monday June 29, 2009

Welcome and Opening Remarks

Dr. Jannine Cody, founder and President of the Chromosome 18 Registry & Research Society, will welcome attendees and provide important conference information.

Fundraising and Recognition

Claudia Traa, Executive Director, and Gloria Ellwanger, Administrative Director, of the Chromosome 18 Registry & Research Society, will provide an update on fundraising activities. 

Behavior-Coping with challenging behaviors: A Parent’s “How to Guide”

Dr. Louise O’Donnell received her doctorate in School Psychology with a subspecialty in internship in Clinical Psychology at the University of Texas Health Science Center San Antonio.  Dr. O’Donnell is an Assistant Professor at the University of Texas Health Science Center San Antonio in the Department of Pediatrics and Psychiatry.  She is also a licensed psychologist in the state of Texas.  Dr. O’Donnell divides her time between clinical research, teaching and assessment and therapy work.  Her research projects include participation in the following:  the Chromosome 18 Clinical Research Center, the National Children’s Study, a study of drug effectiveness for children with ADHD and dyslexia, and a combination imaging and neuropsychological study of incarcerated adolescents with mood disorders.  Teaching activities include courses in human behavior, learning disabilities and psychopathology and her clinical work focuses on children and adolescents with neurodevelopment disorders such as ADHD, learning disabilities and autism spectrum disorders.  

Siblings-Only Discussion Group

Don Meyer is the director of the Sibling Support Project.  Dan was the founder of the SEFAM Program at the University of Washington, which pioneered services for family members of children with special needs.  Don has written many books concerning the affects on various family members of a child with special needs and has been featured in the NY Times, the Washington Post, NPR, Nightline, World News Tonight and 20/20.  In these sessions, Mr. Meyer will help participants learn about the concerns and opportunities frequently experienced by brothers and sisters of people with special needs.  He will discuss what he has learned from researchers, clinicians and siblings themselves about growing up with siblings with special needs.

Grandparents-Only Discussion Group

During this workshop the unique concerns of grandparents of children with disabilities will be discussed.  By sharing experiences, participants help each other develop a broader understanding of the joys and concerns that are part of being a grandparent of a child with special needs (and a parent of the parent of a child with special needs).  Facilitated by Don Meyer (see above).

Dads-Only Discussion Group

This workshop is based on the belief that fathers have the potential to be each other’s best resources.  By sharing experiences and interests, participants help all the group members develop a broader understanding of the joys, concerns and challenges that are part of being a father of a child with special needs.  Facilitated by Don Meyer (see above).

Syndrome Breakouts

Syndrome groups will meet in individual rooms to network with fellow parents and care providers.  Each will have a facilitator to monitor and manage the discussions.  (Adults only please.)

Genetics 101 and Molecular Biology and Research Updates

Dr. Jannine Cody, Ph.D. is the founder and President of the Chromosome 18 Registry & Research Society and Principal Investigator of the Chromosome 18 Clinical Research Center.  Dr. Dan Hale is Co-Principal Investigator and Medical Director of the Chromosome 18 Clinical Research Center.  Together they will give presentations on basic genetics relative to chromosomal abnormalities.

Tuesday June 30, 2009

Mood Disorders in Kids with Disabilities

Dr. W. Burleson Daviss is a child and adolescent psychiatrist and an Associate Professor within the Department of Psychiatry at the University of Texas Health Service Center at San Antonio.  His primary clinical and research interests are related to the assessment and treatment of depression and attention deficit disorders in children.  He currently has a career development award from the National Institute of Mental Health to develop expertise in the pharmacological treatment of ADHD and depression.  He is on the Editorial Board of the Journal of the American Academy of Child and Adolescent Psychiatry, and an active member of the American Academy of Child and Adolescent Psychiatry.  Dr. Daviss will focus this session on the causes, prevention and treatment of mood disorders in kids with disabilities.

O.T. Sensory Integration

Beverly Burnett OTR/L, is a registered and licensed occupational therapist.  She received her B.S. degree from Indiana University-Medical Center in 1978.  She received her certification in sensory integration while she was a practicing therapist for the San Francisco Unified School District.  Subsequently Ms. Burnett updated her certification in the Sensory Integration and Praxis Tests.  Her specialty is working with children who have sensory processing issues as we as regulatory disorders.  This includes children with autism spectrum disorder.  Additionally, in her thirty years of clinical experience she has participated in numerous specialized trainings, such as those in the areas of myofacial release, therapeutic listening, handwriting and fine motor development just to name a few.  For over 6 months she worked with a client as an ABA tutor doing discreet trials.  She has also been invited as a guest lecturer to many community events speaking on the topic of sensory integration, and has taught human development to therapy students at the College of Southern Nevada. 

Do Your Own Advocacy, Financial, Employment, Education, Living and Medical

Kathy Treants came to Nevada PEP in 2006 after 10 years of directing another non-profit, disability support organization.  She is the “best mom” to Brianne who has given her 28 years of experience in the area of advocacy and respect for the abilities of those further challenged in life.  Kathy brings first-hand experience to the Transition Department as the department’s Coordinator.  Her daughter’s active lifestyle has provided many opportunities to explore self-determination, self-advocacy and creative access to adult disability services.  Kathy believes that for necessary changes to take place you need to be an active participant in assisting in the process.  The Transition Department focuses on families and their children who have disabilities and are transitioning into adult life.  Transition topics include self-advocacy, self-determination, preparing for the world of work and/or post secondary education, and being able to access and make informed choices about work, school, recreation, living skills and community agencies. 

Transition Planning with Catherine Burzio

Mock I.E.P.

Anne Eason, Special Education Attorney-at-Law, has a private practice in Norwalk, Connecticut.  This will be an interactive event, as two I.E.P. meeting are reenacted for a student with a disability.  Witness a “Nightmare I.E.P.” and a “Dream I.E.P.”.

Etiquette

Ms. April Renee Gray will present this session.  This young adult session is a participatory program for teaching etiquette. The program will focus on the code of international politeness, cultural awareness and respect, rules of courtesy, dress for success, dining tutorial and other social skills.

The etiquette session is a dynamic seminar that focuses on etiquette intelligence, dining skills and dining out tutorial. Young adults learn:

•    Meeting and greeting
•    How to initiate and carry on a polite conversation
•    How to introduce people
•    The simple rules of courtesy
•    Accepting, extending and declining an invitation
•    RSVP meaning and response
•    Dress for Success
•    Samples of invitations
•    Identifying proper dining utensils and usage
•    Visual dining tutorial
•    Graduation ceremony and four course dining tutorial dinner.

Wednesday, July1, 2009

Special Needs Trust

Ms. Boyer is a partner at the law firm of Bolick & Boyer, and she is Certified as an Elder Law Attorney by the A.B.A. approved National Elder Law Foundation.  She practices in the areas of elder law, estate planning, guardianships and probates. Ms. Boyer received her A.B. degree in Mathematics, summa cum laude, from San Diego State University, and her law degree, magna cum laude, from the University of San Diego School of Law.  During law school, she was an editor of the law review and was elected to membership in the Order of the Coif.  Ms. Boyer is licensed to practice in Nevada, and is admitted to the U.S. District Courts for the District of Nevada and the Ninth Circuit Court of Appeals.  She is a  member of the National Academy of Elder Law Attorneys and the National Guardianship Association.  She is co-author of the book Alzheimer’s and Dementia:  A Practical and Legal Guide for Nevada Caregivers, published by the University of Nevada Reno Press.  Ms. Boyer publishes a newsletter addressing issues facing seniors and their families, and is a frequent speaker on aging and elder law topics.

Advocacy in the Private Medical Insurance Context

Ms. Kraus currently assists parents in planning for the future of their child with special needs.  Her personal and professional experiences have taught her the power of advocacy and she enjoys sharing about parent advocacy and empowerment, especially in the medical insurance area.  For more than 10 years, Marla has worked within the special needs community, most recently as the Executive Director of Special Needs Advocate for Parents (SNAP), a non-profit organization assisting parents of children with special needs.  Prior to becoming SNAP’s Executive Director, Ms. Kraus was one of SNAP’s original Board Members while also working as in-house counsel to a Santa Monica City agency.  Earlier she worked in the Office of the California State Public Defender where she practiced in front of the California Courts of Appeal.  Ms. Kraus has a J.D. from Loyola University School of Law in Los Angeles and an A.B. from the University of California Berkeley plus she has completed courses in mediation, negotiation and applied psychology.  Marla is married to John and has three children:  Jacob, Sam and Julia.  Sammy passed away in 1994 from complications of his disability.

Advocacy:  Nevada Disability Advocacy and Law Center

Caroline Taylor, has worked as an advocate for Nevada Disability Advocacy and Law Center in Las Vegas for five years.  In addition to her IEP and IFSP advocacy work, Caroline is involved with statewide transition issues for young adults with disabilities ages 14 – 22.  Caroline keeps busy chasing her dogs, baking, and enjoying the Las Vegas desert.

Hair/Makeup Artists and Dance

The young adults will be pampered with hair and makeup artists prior to their special dance.  The dance will have music, a DJ, and refreshments.

Wellness Life Coaching with Jim Ellwanger

Discussion with and by Young Affected Adults

This session will include a panel of young adults affected by a chromosome 18 anomaly.  The discussion will focus on their challenges, successes and everything in-between.  Facilitated by Rick Guidotti of Positive Exposure (see below).

Discussion with and by Siblings of Children with Chromosome 18 Anomalies

This session will include a panel of siblings with siblings of chromosome 18 anomalies.  The discussion will focus on their challenges, successes and everything in-between when having a sibling with a chromosome 18 anomaly.  Facilitated by Rick Guidotti of Positive Exposure (see below).

Positive Exposure

Rick Guidotti will reflect on his years attending Chromosome 18 conferences.  With his camera, he challenges the stigma associated with difference and celebrates the richness of genetic variation with positive images and powerful life stories.

Thursday, July 2, 2009

Syndrome Breakouts

This session will provide the syndrome groups to meet and discuss with fellow parents and care providers.  You will meet in individual rooms specified by your syndrome.  Each will facilitate to monitor and manage the discussions.  (Adults only please.)

All Groups – Mix and Mingle (Picture Show)

This session will give the attendees much needed time to discuss and meet with all of the different syndromes.  We will meet in Veranda A & B as a group.  Rick Guidotti, from Positive Exposure, will show his picture slide show for all of us to enjoy.

Bereavement Discussion Group

Susan E. Whitmore, president of the Erika Whitmore Godwin Foundation, along with Wendell Whitmore, vice-president of the Foundation, will be giving a workshop on bereavement.  The loss of a child thrust into a grief that is the worst pain anyone must endure.  Parents need to know that they are not alone and that, with hope and support, they can put their lives together again.  Erika Whitmore Godwin Foundation provides grieving parents, family members and friend’s information, support, and resources to help them through the grieving process. 

To see a complete schedule with times and locations, please go here.

Please note that all children must be registered in Childcare in order to participate in the Children's Activities.  The Childcare fee is included in your registration fee.

Monday June 29, 2009

Welcome and Opening Remarks

Dr. Jannine Cody, founder and President of the Chromosome 18 Registry & Research Society, will welcome attendees and provide important conference information.

Fundraising and Recognition

Claudia Traa, Executive Director, and Gloria Ellwanger, Administrative Director, of the Chromosome 18 Registry & Research Society, will provide an update on fundraising activities. 

Behavior-Coping with challenging behaviors: A Parent’s “How to Guide”

Dr. Louise O’Donnell received her doctorate in School Psychology with a subspecialty in internship in Clinical Psychology at the University of Texas Health Science Center San Antonio.  Dr. O’Donnell is an Assistant Professor at the University of Texas Health Science Center San Antonio in the Department of Pediatrics and Psychiatry.  She is also a licensed psychologist in the state of Texas.  Dr. O’Donnell divides her time between clinical research, teaching and assessment and therapy work.  Her research projects include participation in the following:  the Chromosome 18 Clinical Research Center, the National Children’s Study, a study of drug effectiveness for children with ADHD and dyslexia, and a combination imaging and neuropsychological study of incarcerated adolescents with mood disorders.  Teaching activities include courses in human behavior, learning disabilities and psychopathology and her clinical work focuses on children and adolescents with neurodevelopment disorders such as ADHD, learning disabilities and autism spectrum disorders.  

Siblings-Only Discussion Group

Don Meyer is the director of the Sibling Support Project.  Dan was the founder of the SEFAM Program at the University of Washington, which pioneered services for family members of children with special needs.  Don has written many books concerning the affects on various family members of a child with special needs and has been featured in the NY Times, the Washington Post, NPR, Nightline, World News Tonight and 20/20.  In these sessions, Mr. Meyer will help participants learn about the concerns and opportunities frequently experienced by brothers and sisters of people with special needs.  He will discuss what he has learned from researchers, clinicians and siblings themselves about growing up with siblings with special needs.

Grandparents-Only Discussion Group

During this workshop the unique concerns of grandparents of children with disabilities will be discussed.  By sharing experiences, participants help each other develop a broader understanding of the joys and concerns that are part of being a grandparent of a child with special needs (and a parent of the parent of a child with special needs).  Facilitated by Don Meyer (see above).

Dads-Only Discussion Group

This workshop is based on the belief that fathers have the potential to be each other’s best resources.  By sharing experiences and interests, participants help all the group members develop a broader understanding of the joys, concerns and challenges that are part of being a father of a child with special needs.  Facilitated by Don Meyer (see above).

Syndrome Breakouts

Syndrome groups will meet in individual rooms to network with fellow parents and care providers.  Each will have a facilitator to monitor and manage the discussions.  (Adults only please.)

Genetics 101 and Molecular Biology and Research Updates

Dr. Jannine Cody, Ph.D. is the founder and President of the Chromosome 18 Registry & Research Society and Principal Investigator of the Chromosome 18 Clinical Research Center.  Dr. Dan Hale is Co-Principal Investigator and Medical Director of the Chromosome 18 Clinical Research Center.  Together they will give presentations on basic genetics relative to chromosomal abnormalities.

Tuesday June 30, 2009

Mood Disorders in Kids with Disabilities

Dr. W. Burleson Daviss is a child and adolescent psychiatrist and an Associate Professor within the Department of Psychiatry at the University of Texas Health Service Center at San Antonio.  His primary clinical and research interests are related to the assessment and treatment of depression and attention deficit disorders in children.  He currently has a career development award from the National Institute of Mental Health to develop expertise in the pharmacological treatment of ADHD and depression.  He is on the Editorial Board of the Journal of the American Academy of Child and Adolescent Psychiatry, and an active member of the American Academy of Child and Adolescent Psychiatry.  Dr. Daviss will focus this session on the causes, prevention and treatment of mood disorders in kids with disabilities.

O.T. Sensory Integration

Beverly Burnett OTR/L, is a registered and licensed occupational therapist.  She received her B.S. degree from Indiana University-Medical Center in 1978.  She received her certification in sensory integration while she was a practicing therapist for the San Francisco Unified School District.  Subsequently Ms. Burnett updated her certification in the Sensory Integration and Praxis Tests.  Her specialty is working with children who have sensory processing issues as we as regulatory disorders.  This includes children with autism spectrum disorder.  Additionally, in her thirty years of clinical experience she has participated in numerous specialized trainings, such as those in the areas of myofacial release, therapeutic listening, handwriting and fine motor development just to name a few.  For over 6 months she worked with a client as an ABA tutor doing discreet trials.  She has also been invited as a guest lecturer to many community events speaking on the topic of sensory integration, and has taught human development to therapy students at the College of Southern Nevada. 

Do Your Own Advocacy, Financial, Employment, Education, Living and Medical

Kathy Treants came to Nevada PEP in 2006 after 10 years of directing another non-profit, disability support organization.  She is the “best mom” to Brianne who has given her 28 years of experience in the area of advocacy and respect for the abilities of those further challenged in life.  Kathy brings first-hand experience to the Transition Department as the department’s Coordinator.  Her daughter’s active lifestyle has provided many opportunities to explore self-determination, self-advocacy and creative access to adult disability services.  Kathy believes that for necessary changes to take place you need to be an active participant in assisting in the process.  The Transition Department focuses on families and their children who have disabilities and are transitioning into adult life.  Transition topics include self-advocacy, self-determination, preparing for the world of work and/or post secondary education, and being able to access and make informed choices about work, school, recreation, living skills and community agencies. 

Transition Planning with Catherine Burzio

Mock I.E.P.

Anne Eason, Special Education Attorney-at-Law, has a private practice in Norwalk, Connecticut.  This will be an interactive event, as two I.E.P. meeting are reenacted for a student with a disability.  Witness a “Nightmare I.E.P.” and a “Dream I.E.P.”.

Etiquette

Ms. April Renee Gray will present this session.  This young adult session is a participatory program for teaching etiquette. The program will focus on the code of international politeness, cultural awareness and respect, rules of courtesy, dress for success, dining tutorial and other social skills.

The etiquette session is a dynamic seminar that focuses on etiquette intelligence, dining skills and dining out tutorial. Young adults learn:

•    Meeting and greeting
•    How to initiate and carry on a polite conversation
•    How to introduce people
•    The simple rules of courtesy
•    Accepting, extending and declining an invitation
•    RSVP meaning and response
•    Dress for Success
•    Samples of invitations
•    Identifying proper dining utensils and usage
•    Visual dining tutorial
•    Graduation ceremony and four course dining tutorial dinner.

Wednesday, July1, 2009

Special Needs Trust

Ms. Boyer is a partner at the law firm of Bolick & Boyer, and she is Certified as an Elder Law Attorney by the A.B.A. approved National Elder Law Foundation.  She practices in the areas of elder law, estate planning, guardianships and probates. Ms. Boyer received her A.B. degree in Mathematics, summa cum laude, from San Diego State University, and her law degree, magna cum laude, from the University of San Diego School of Law.  During law school, she was an editor of the law review and was elected to membership in the Order of the Coif.  Ms. Boyer is licensed to practice in Nevada, and is admitted to the U.S. District Courts for the District of Nevada and the Ninth Circuit Court of Appeals.  She is a  member of the National Academy of Elder Law Attorneys and the National Guardianship Association.  She is co-author of the book Alzheimer’s and Dementia:  A Practical and Legal Guide for Nevada Caregivers, published by the University of Nevada Reno Press.  Ms. Boyer publishes a newsletter addressing issues facing seniors and their families, and is a frequent speaker on aging and elder law topics.

Advocacy in the Private Medical Insurance Context

Ms. Kraus currently assists parents in planning for the future of their child with special needs.  Her personal and professional experiences have taught her the power of advocacy and she enjoys sharing about parent advocacy and empowerment, especially in the medical insurance area.  For more than 10 years, Marla has worked within the special needs community, most recently as the Executive Director of Special Needs Advocate for Parents (SNAP), a non-profit organization assisting parents of children with special needs.  Prior to becoming SNAP’s Executive Director, Ms. Kraus was one of SNAP’s original Board Members while also working as in-house counsel to a Santa Monica City agency.  Earlier she worked in the Office of the California State Public Defender where she practiced in front of the California Courts of Appeal.  Ms. Kraus has a J.D. from Loyola University School of Law in Los Angeles and an A.B. from the University of California Berkeley plus she has completed courses in mediation, negotiation and applied psychology.  Marla is married to John and has three children:  Jacob, Sam and Julia.  Sammy passed away in 1994 from complications of his disability.

Advocacy:  Nevada Disability Advocacy and Law Center

Caroline Taylor, has worked as an advocate for Nevada Disability Advocacy and Law Center in Las Vegas for five years.  In addition to her IEP and IFSP advocacy work, Caroline is involved with statewide transition issues for young adults with disabilities ages 14 – 22.  Caroline keeps busy chasing her dogs, baking, and enjoying the Las Vegas desert.

Hair/Makeup Artists and Dance

The young adults will be pampered with hair and makeup artists prior to their special dance.  The dance will have music, a DJ, and refreshments.

Wellness Life Coaching with Jim Ellwanger

Discussion with and by Young Affected Adults

This session will include a panel of young adults affected by a chromosome 18 anomaly.  The discussion will focus on their challenges, successes and everything in-between.  Facilitated by Rick Guidotti of Positive Exposure (see below).

Discussion with and by Siblings of Children with Chromosome 18 Anomalies

This session will include a panel of siblings with siblings of chromosome 18 anomalies.  The discussion will focus on their challenges, successes and everything in-between when having a sibling with a chromosome 18 anomaly.  Facilitated by Rick Guidotti of Positive Exposure (see below).

Positive Exposure

Rick Guidotti will reflect on his years attending Chromosome 18 conferences.  With his camera, he challenges the stigma associated with difference and celebrates the richness of genetic variation with positive images and powerful life stories.

Thursday, July 2, 2009

Syndrome Breakouts

This session will provide the syndrome groups to meet and discuss with fellow parents and care providers.  You will meet in individual rooms specified by your syndrome.  Each will facilitate to monitor and manage the discussions.  (Adults only please.)

All Groups – Mix and Mingle (Picture Show)

This session will give the attendees much needed time to discuss and meet with all of the different syndromes.  We will meet in Veranda A & B as a group.  Rick Guidotti, from Positive Exposure, will show his picture slide show for all of us to enjoy.

Bereavement Discussion Group

Susan E. Whitmore, president of the Erika Whitmore Godwin Foundation, along with Wendell Whitmore, vice-president of the Foundation, will be giving a workshop on bereavement.  The loss of a child thrust into a grief that is the worst pain anyone must endure.  Parents need to know that they are not alone and that, with hope and support, they can put their lives together again.  Erika Whitmore Godwin Foundation provides grieving parents, family members and friend’s information, support, and resources to help them through the grieving process.