Friday Saturday Sunday

FRIDAY, July 10

2:00 – 4:00 pm
Pre-Conference Sessions at Chicago Marriott Medical District Hotel


2:00 – 4:00 pm
Mothers’ Support Group focused on the emotions that arise with having a child with a visual impairment. RSVP required to


2:00 – 4:00 pm
NAPVI Affiliate Parent Leaders’ Seminar & FamilyConnect


12:00 – 7:00 pm
Registration at Chicago Marriott Medical District Hotel


5:00 – 7:00 pm
Dinner on your own


7:00 – 9:00 pm
Welcome Reception at Chicago Marriott Medical District Hotel
Opening Plenary Session
•    Jim Kesteloot
Jim will share about his experiences growing up being visually impaired and his parents’ influence on his life and how important it was.  He will share stories about his family life and parenting concepts.
•    David Lepofsky
Perspectives of someone who had partial vision and someone who is totally blind.


7:30 – 8:30 am
Breakfast at Chicago Marriott Medical District Hotel


7:30 – 9:30 am
Registration at The Chicago Lighthouse


8:00 am – 5:00 pm
Exhibit Hall opens at The Chicago Lighthouse


8:15 – 8:45 am
Childcare Check-in opens at The Chicago Lighthouse
Adaptive Sports 5+


9:00 – 10:00 am

Welcome Plenary Session
“Working with Families with Visual Impairments: A Pediatric Ophthalmologist’s Perspective”
•    Dr. Gamm, MD will discuss his experience working with families with vision impairment, with an emphasis on broad issues, common concerns and possible solutions.
•    Gerald Fishman, MD will give an overview of treatment strategies for inherited retinal diseases and what you need to know before entering a treatment trial. Dr. Fishman will also describe the pitfalls in predicting the prognosis for visual loss in ocular disease.


10:15 – 11:30 am
Eye Condition Sessions

Group A: Stem Cell Research and Inherited Retinal Diseases
Group B: Albinism and Ocular Genetics
Group C: Ocular Trauma and Retinal Conditions
Group D: Congenital Disorders
Group E: Juvenile Cataracts and Ocular Motility Disorders
Group F: Corneal Disease


11:45 am – 12:45 pm

Onsite Childcare Closes for Lunch


11:45 am – 12:45 pm
Lunch and Eye Condition Networking at The Chicago Lighthouse


1:00 – 5:15 pm

Onsite Childcare is open


1:00 – 2:15 pm
First Breakout Session

Unified English Braille: What Is It and Why Is It Important?

•    Sharon Howerton, Instructor, Hadley School for the Blind
Sharon has worked in the blindness field for the past 40 years. She will discuss with participants why, in the age of new technology, learning Braille is still important, and how the introduction of the new Unified English Braille will affect its study.


Adaptive Sports: Skills for Success On and Beyond the Playing Field
•    Matt Simpson, Membership and Outreach Coordinator, United States Association of Blind Athletes
Matt was born with Leber Congenital Amaurosis. At the age of ten he made it his goal to become a Paralympic athlete. Learn how sport, from amateur to professional, can impact people who are blind and visually impaired.  Discover skills and confidence children can gain from participating in physical activities with their peers, blind and sighted alike.


Insider’s Scoop: Obtaining the Best Kindergarten Program for Your Child

•    Linda Gerra, EdD, Director, Educational Programs, Lighthouse Guild
•    Joanne Shen, Principal, The Ethel and Samuel J. LeFrak School at Lighthouse Guild
This presentation covers the kindergarten application process, researching possible schools and what to look for, preparing for the Individual Education Plan (IEP) meeting and advocating for your child’s needs.

Technology Session: New Technologies for the Blind and Visually Impaired Made Easy

•    Tom Perski, Senior Vice President/Rehabilitation Services, The Chicago Lighthouse
•    Peter Tucic, who mans the National Helpdesk in The Chicago Lighthouse’s Assistive Technology Department
The presentation will cover: the latest in low vision technology; getting the most out of a portable note-taker; using a Braille display along with a screenreader or mobile device; useful apps for reading documents or textbooks, and a discussion of the power of stand-alone portable devices for reading and downloading textbooks and research materials.


Life After Graduation from School for Young Adults with Severe Multi-Handicapping Conditions

•    Scott Truax, FamilyConnect Program Manager, American Foundation for the Blind
•    Emily Coleman, Parent/Director of Outreach/WA State Vision Consultant
What happens after age 21 when the familiar routines of school life disappear?  There are many different roads an individual and their family can take, with most dependent on the community resources available.  The session discusses how best to prepare your child for adulthood, and will include examples of employment, day programs and living situations.


Communication Strategies for Children Who Are Deaf-Blind

•    Veramarie Baldoza, MA, NIC, Deaf-Blind Technology Instructor
Presenter will share communication methods used with children who are deaf blind. Some of the strategies on technology,  devices, and interveners will be shared.  Attendees will have the opportunity to participate in a Deaf-Blind  assimilation activity.


Getting into the Community: Orientation and Mobility (O&M) for School-Age Children

•    Kirstin Peahl, Certified Orientation & Mobility Specialist
This session is an introduction to the progress of O&M from preschool through high school and will include AMD’s/pre-canes, canes and other “travel tools”.  The session also considers grade level expectations for a variety of O&M skills.


2:30 – 3:45 pm
Second Breakout Session


Social Skills: A Key to Life Success

•    Karen Wolffe, PhD, Career Counselor/Consultant
In the session, Dr. Wolffe introduces attendees to the importance of social interaction in the lives of children and adolescents with vision impairments.  She provides structured activities that parents and professionals can use to facilitate the acquisition of social competence.  Current resources will also be shared.


Navigating the Individual Education Plan (IEP) for Parents

•    Julie Urban, NAPVI President  and Parent, Phoenix, AZ
•    Venetia Hayden, NAPVI Vice-President and Parent, Tucson, AZ
Julie Urban and Venetia Hayden are both parents of children with visual impairments as well as Teachers of the Visually Impaired.  They are experienced in working with children of all ages in residential schools, private agencies for the blind and public schools.  Join them and bring your questions, concerns and/or solutions about the IEP.


An Occupational Therapist’s (OT) Perspective on Early Literacy Learning for Students with Visual Impairment and Multiple Disabilities

•    Bernadine Noguera, OTR, Occupational Therapist, Harriet and Robert Heilbrunn School, Lighthouse Guild
This presentation discusses skills necessary to support emergent literacy from an OT’s perspective. Children with vision impairment and other multiple disabilities need individualized approach, meaningful, supportive and systematic instruction to support learning.  We will explore essential concepts such as gross motor and fine motor development, postural control, body awareness and concept development.


Early Literacy Strategies: How to Read Aloud to Your Child Who is Blind

•    Matt Kaplowitz, President, Bridge Multimedia
•    David Lepofsky, Parent, Toronto 
In this interactive session parents are encouraged to read books with their young children, and guidance is given on how to do it. Recording childhood memories is also important both to you and your child.  Instruction will be given on how to make your own audio books for a child with vision loss.


Preparation for Life After High School

•    Donna Karlson, Guidance/Transition/Vocational Counselor, New York Institute for Special Education (NYISE)
Donna Karlson brings over 41 years of experience in the field of advising students and their parents on planning the foundation on which to live independent lives.  Participants will be given a practical understanding of how to review the SAT guide for students requiring accommodations and  guiding their child to college and beyond.


Parents Have the Power to Make an Impact: Creating New Services for Our Children

•    Rebecca Davis, Parent and Development Director & Parent Advisor for Visually Impaired Preschool Services, (VIPS-Indiana)
•    Ann Hughes, Teacher of the Visually Impaired, and Early Intervention Specialist for VIPS-Indiana
Change often begins with one person saying, “Enough”.  This presentation discusses how one mother’s frustration with a lack of appropriate early intervention for her legally blind daughter led her to find the support necessary to bring services to Indiana’s youngest blind children.


Vision Development and the Impact on Learning in Infants and Preschool Children

•    Linda Gerra, EdD, Director, Educational Services, Lighthouse Guild
The session will review the stages of vision development from birth to age 5, and look at the effect of vision loss on early childhood development.  The implications of specific areas of vision loss on early childhood development will also be considered and recommendations for educational strategies will be discussed.


4:00 – 5:15 pm
Third Breakout Session



Practical Tips for Advocating for Your Child at School, in Recreational Programs and Anywhere Else

•    David Lepofsky, Parent, Toronto, and a courtroom lawyer for over three decades
Every parent of a child with vision loss must become an effective advocate, when trying to overcome barriers in access to education, recreation or anywhere else.  This presentation aims at parents with no legal training.  Tips focus on how to set your goals, how to figure out who you need to convince, how to make your points and how to follow up.


Communication Skill Building for Learners with Visual Impairments and Multiple Disabilities

•    Lori Robinson, MA, CCC-SLP, Speech/Language Pathologist, The Harriet and Robert Heilbrunn School, Lighthouse Guild

Because of their varied developmental and sensory profiles, students with visual impairments and multiple disabilities can also be delayed in their communication development.  This presentation offers helpful perspectives and creative ideas on how to assist these children in learning to engage, connect and express themselves.


The College Financial Aid Process and College Scholarships for Students Who Are Blind

•    Gordon Rovins, Director of Special Programs, Lighthouse Guild
•    Andrew Fisher, PhD, Executive Director, Lavelle Fund for the Blind
This talk will review the college financial aid process and the types of assistance available to students and their families. Specific scholarship programs for blind students will also be discussed.


Dealing with Negative Comments from the Inside-Out

•    Sheila Adamo, LCSW, is currently in charge of the New Parent Program for NOAH, the National Organization of Albinism and Hypopigmentation.  She facilitates various groups for NOAH as well as Lighthouse Guild’s Albinism tele-support group.
This workshop helps parents examine how to effectively deal with comments and questions about their child while being positive role models.  Parents will be given tools to help them examine their own negative self-talk and strategies on how to deal with them.


Technology Session: New Technologies for the Blind and Visually Impaired Made Easy

•    Tom Perski, Senior Vice President/Rehabilitation Services, The Chicago Lighthouse
•    Peter Tucic, who mans the National Helpdesk in The Chicago Lighthouse’s Assistive Technology Department
The presentation will cover the latest in low vision technology; getting the most out of a portable note-taker; using a Braille display along with a screenreader or mobile device; useful apps for reading documents or textbooks, and a discussion of the power of stand-alone portable devices for reading and downloading textbooks and research materials.


Resources for Parents of Children Who Are Visually Impaired

•    Emily Coleman, Parent/Director of Outreach/WA State Vision Consultant
My husband and I have three kids, including Eddie, who is blind due to optic nerve hypoplasia and he has additional disabilities.  After his blindness diagnosis, we explored resources and strategies that I look forward to sharing with you.  Our journey isn’t unique, and can be related to each family walking a similar path.


5:00 pm
Exhibit Hall closes


5:15 pm
Childcare closes


5:15 – 6 pm
Frozen Yogurt – Everyone please come!


6:30 pm
Dinner on your own or in groups to Italian District
After Dinner Reception and Entertainment at the Hotel
Dad’s Drop-in Support Group Meeting at the Hotel


SUNDAY, July 12

7:30 – 8:30 am
Breakfast at the Hotel


8:30 am – 12:00 pm
Childcare open


9:15 – 10:30 am
Fourth Breakout Session

What Is the Expanded Core Curriculum (ECC)? Easy Ways to Teach Skills to Kids Who Are Visually Impaired

•    Monica Turner, Field Services Representative, American Printing House for the Blind
The session presents the Quick & Easy Expanded Core Curriculum: The Hatlen Center Guide.  Designed for transition-aged students who are visually impaired,  it contains lessons to address the areas of the ECC in a variety of settings.  The lessons address the most common gaps found within this population and require little time to implement.


Psychological Aspects for Adapting to Being Blind

•    Joseph Wallach, PhD, Licensed Clinical Psychologist
An overview of the process in accepting visual impairment from both the parent’s and the child’s perspective:  denial, avoidance, anger, bargaining, depression, anxiety, acceptance.  Feeling different, being different and becoming oneself.  Talking with someone can help you learn to relax and take care of yourself, and find ways to cope, survive and thrive.


Digital Books: What’s New and Improved and Is it Really Possible to Get Textbooks on Demand?

•    Mary Alexander, Parent and National Program Director, Learning Ally (formerly Recordings for the Blind and Dyslexic)
•    Mario Oliveros, Senior Marketing Communications Manager, Benetech, Global Literacy Program
Discuss and learn about the digital learning environment.  Increase your understanding of what you need to know and can do to support your child in accessing books and reading.  Learn about “textbooks on demand”, devised specifically for students in higher education who are blind or visually impaired.  We can also talk about your favorite reading devices.


Orientation and Mobility Strategies for Infants and Toddlers Who Have Visual Impairments

•    Carol A. Otten, COMS, Certified Orientation and Mobility Specialist, North Suburban Special Education District,  Chicago, IL
This session focuses on the development of orientation and mobility skills during early intervention and the preschool years.  Strategies and suggestions will be shared on: when it is important to include the O&M Specialist;  how you can promote motor development; prepare a child for good mobility skills; and the use of Adapted Mobility Devices and canes.


Building on Daily Routines to Create Multifaceted Learning Experience for Students with Visual Impairments and Multiple Disabilities: Two Case Studies

•    Bernadine Noguera, OTR, Occupational Therapist, Harriet and Robert Heilbrunn School, Lighthouse Guild
•    Lori Robinson, MA, CCC-SLP, Speech/Language Pathologist, The Harriet and Robert Heilbrunn School, Lighthouse Guild
Children with visual impairments and multiple disabilities can have trouble learning new concepts or new ways to do things.  By building on familiar routines, parents and educators can help build the concepts and ideas needed to increase  independence.  Two case studies illustrate how a regular routine can expand your child’s possibilities.


After School Sports and Recreation for Everyone

•    Lauren Lieberman, Distinguished Service Professor, The College at Brockport, Brockport, NY

After school sports and recreation can make any child feel valued and increase self-determination. Unfortunately, many children with visual impairments do not have equal opportunities to engage in these activities.  This session discusses what the laws say about this topic and strategies to get your child more involved.  Topics include overcoming barriers, modification, training staff, advocacy and facilitating inclusion.


Fun in the Kitchen, Skills for a Lifetime: How to Teach Children Who Are Blind to Safely Help Out!

•    Gwen Botting, Founding Parent Leader of the Michigan Parents of the Visually Impaired and Executive Director of Opportunities Unlimited for the Blind
Are you afraid to let your child learn to use a sharp kitchen knife?  This session shows how children who are blind or visually impaired can gain skills in the kitchen, having fun while being safe!


10:30 – 11:45 am
Closing Plenary Session

•    Kevin O’Connor
“Parent Purposefully – Advocate Relentlessly – Encourage Endlessly”
Today’s parent of a child who is visually impaired is continually learning, growing, and acquiring skills we never knew we had…or ever needed! Join us for this closing keynote as we once again leave our BFFs from this conference and move out into the world that we will make better for our children with our parenting, our advocacy, and our encouragement.
•    Matt Simpson
“The importance of sport for developing confidence and independence in life skills for youth with visual impairments.”  Being involved with sports can help encourage/develop socialization skills, competing with and working with your peers.  How do these skills translate into becoming a successful blind adult on and off the playing field? 


12:00 pm
Program ends
Childcare closes