NOAH Parent Connections Logo with Photos

NOAH, in partnership with Lighthouse Guild International, has developed a free parent support teleconference program as another way to bring the albinism community together. Parent Connections is an opportunity to talk with others who understand what you are going through as a parent of a child with albinism. The teleconferences are facilitated by a licensed professional and consist of a limited number of parents. This provides a safe and comfortable environment for you to voice concerns, ask questions, share your experiences, and hear from professional guest speakers.


Join the Group!

In the Parent Connections teleconferences, parents of children with albinism meet two times a month to discuss relevant topics with each other and learn from our guest speakers. To join us, please fill out the brief intake form, and the Parent Connections Coordinator will contact you soon!

Do You Know About Grandparent Connections?

We also have something special for YOUR parents! Learn more about our Grandparent Connections Teleconferences.


Upcoming Sessions 2019

Please note: 
While our teleconferences take place regularly, they aren’t scheduled on a consistent day of the week, and the time of day varies for each call.

Linda Hughes

A Parent’s Journey
Linda Hughes

Monday, November 18, 2019
1:00 – 2:00 PM ET // 12:00 – 1:00 PM CT // 11:00 AM – 12:00 PM MT // 10:00 – 11:00 AM PT

Join us as Linda Hughes shares her inspirational journey of raising her son Gregory, who is legally blind and has albinism.  Learn about both of their accomplishments and how they confronted daily challenges while achieving great success.  

Gregory Hughes was the recipient of the Bill Gates Scholarship to Cambridge University where he obtained his PhD in Human Computer Interaction. Eventually recruited by Apple Computers, he is now the Director of Accessibility Programs, recently winning the coveted American Foundation for the Blind award for his development of voice over for the I-Phone. He accredits his successful young life to his mom who always found ways for him to succeed.  Describing his vision, Gregory had always told people that the only thing he couldn’t do was see to read and to drive, but now, living in Silicon Valley, California, he is able to do both!”

Learn more about Linda Hughes


Lighthouse Guild Monthly Calls

lighthouse guild logo

All Parent Connections members are also encouraged to join in the Lighthouse Guild’s Tele support calls for Parents of Children with a Visual Impairment. If you are not a member of Parent Connections please fill out the intake form and the program coordinator will contact you soon.

Tips to Decrease Stress when Traveling with a Child with a Visual ImpairmentJudith Millman

Monday, November 18, 2019
8:30-9:30 PM ET // 7:30-8:30 PM CT // 6:30-7:30 PM MT // 5:30-6:30 PM PT

This call will address traveling with children with vision impairments and how to decrease stress and increase confidence. 

Learn more about Judith Millman


Learn More about our call hosts:

Sheila Adamo, LCSW, CADC is a Licensed Clinical Social Worker with an additional certification in Alcohol and Drug Abuse Counseling. She is the co-owner of Building Parent Connections which provides education, guidance and support to parents of children with special needs. She specializes in creating workshops, discussion groups, teleconferences and conference presentations that address the unique needs of parents of children with special needs. Within NOAH, she currently manages the New Parent Program, Grandparent Connections and Parent Connections, as well as the Mother’s workshop. Ms. Adamo served on the NOAH board of directors for eight years and as board chair for two years. Ms. Adamo currently lives with her husband and their four children, one of which has albinism, in Naperville, Illinois.

Dr. Rick Thompson is a fourth generation optometrist who graduated from the University of Waterloo, Ontario, Canada in 1979.  He earned his fellowship at the American Academy of Optometry in 1982. In 1985, his interest in children’s vision led him to study developmental and behavioral optometry.  In 1993, he and his wife Trish, gave birth to their fourth child, Lee-Anne, who has albinism. He is currently in private practice where he offers general optometric care as well as vision therapy and low vision services to both children and adults. Dr. Thompson contributed to the vision section NOAH’s 2008 publication, “Raising a Child with Albinism.” He currently serves as a Rapid Responder for NOAH and as Chair of NOAH’s Board of Scientific Advisors.

Susan M. Dalton, M.S.Ed., CVRT is a Certified Vision Rehabilitation Therapist, currently on the faculty of Northern Illinois University’s Department of Special and Early Education. She has worked as a developmental therapist, teacher of visually impaired and most recently directed a transition program for teens in Illinois for 17 years. The parent of three adult children, two who have albinism, Sue has walked the path of transition many times and appreciates the uniqueness of every child in this exciting and challenging experience.

Lee-Anne Thompson is an adult with albinism working towards her master’s degree in social work at the University of Toronto (expected graduation in 2020). Prior to this, she attended the University of Waterloo where she completed her Bachelor of Arts in Social Development Studies and her Bachelor of Social Work. Lee-Anne has been a member of the NOAH community since 1994 attending her first conference in Philadelphia at nine months old. In 2016, she won the Michael J. McGowan Leadership Scholarship. Growing up connected to the albinism community has been a real asset to Lee-Anne.

Linda Hughes has worked in the field of blindness for thirty years; Program Director at RI Services for the Blind, volunteer director of a summer and winter camp for children who are blind and visually  impaired, grant writer and director of the Independent Living Program and Early Intervention Program for the blind. The author of “The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane”, Linda has been the recipient of several national awards.

Kris Elliot Baker is an Instructor of Music Theory and Composition at Brookhaven College School of the Arts. She is also a photographer, serving on the creative team for a large online based photography community.

Shelly Francis currently works as an Accessibility Counsellor (Post-Secondary Accommodations Planning), Career Counsellor, and EAP Provider. She has her Bachelors degree in family studies and social work and her Masters degree in Social Work.

Becca Evans, MSOT, OTR/L has been an occupational therapist in a variety of settings including acute care, skilled nursing facility, pediatric outpatient clinics and inpatient rehab. She earned her master’s degree in occupational therapy from Washington University in St. Louis School of Medicine in 2009. She spent a month volunteering in Uganda at an orphanage in 2008.

Rosalind Watkins is currently a Special Assistant Attorney General in Atlanta, Georgia.

Nancy Doyle is a New York State Certified Teacher of the Visually Impaired (TVI) with over 15 years of experience teaching children with visual impairments and other disabilities.  Teaching experience has primarily been in preschool settings and as an early intervention home and center-based provider.  She also works with the Lighthouse Guild Family Support Program providing resources and information to families of children with visual impairments.

Gordon Rovins MS, CEAC, Director of Special Programs, has been with Lighthouse Guild and Jewish Guild Healthcare for 30 years. As Director of Special Programs, he oversees the LGI scientific awards programs (Bressler Prize and Pisart Award) and the LGI college scholarship program. He is a Certified Environmental Access Consultant with an expertise on the Americans with Disabilities Act and the Federal Fair Housing Act.  He received his MS degree in Environmental Psychology from Polytechnic University and has over 35 years experience working with people with disabilities. Before assuming his present position at The Guild, Mr. Rovins was Director of Joselow House, a residential facility for blind and developmentally disabled adults, formerly operated by The Guild. He is a co-author of a curriculum developed for The American Occupational Therapy Association entitled: Low Vision in Older Adults: Foundations for Rehabilitation. Mr. Rovins also works as an accessibility consultant to assist architects, healthcare providers and organizations design and rehabilitate facilities for seniors, people with vision impairments and other disabling conditions.

Lilly Jackanin is an experienced bilingual (English and Spanish) LCSW and community advocates providing services to individuals living in the New York area.  She was employed as a Social Worker at Lighthouse International, providing services for persons with impaired vision, for twenty-four years. During this time, she provided psychotherapy services and crisis intervention as well as case coordination.  In addition, she collaborated with the staff psychiatrist to develop and periodically review client treatment plans and progress. Beginning in 2010, she began working at Jewish Guild HealthCare as a Group Facilitator, planning and facilitating Spanish- and English-speaking support groups for parents of children with disabilities.  She provides advocacy services for students regarding their Individual Education Plans when needed. 

Lilly Jackanin received her Bachelor’s Degree from Hunter College, with a specialization in Political Science and Sociology.  She later obtained her MSW Degree from Fordham University with an overall concentration in Clinical Intervention. She is currently working at Catholic Charities, where she provides individual counseling for Consumers experiencing vision loss.  She is also presently facilitating a support group for immigrants with visual impairment and other disabilities.  

 

Carmen Lizzette Camacho, MA, LSW works as a clinical counselor at Advocates Community Counseling as well as an Emergency Room Mental Health Clinician. She graduated from SUNY Binghamton with an MA in psycho-pharmacology. For more than 15 years Carmen has worked in the field of mental health, social services, advocacy and patient education. She has worked for state agencies, like the Department of Children and Family Services as well as non-for-profit organizations, like Catholic Charities. Carmen is also a member of the HPS Board of Directors and serves as a supportive ally for those diagnosed with HPS. Carmen lives in Massachusetts with her husband and two children.

Judith Millman has been working in the field of vision rehab for most of her professional career—retiring from the Lighthouse as the Vice President for the Hudson Valley after 30 years of service. Ms. Millman has been facilitating the CVI telesupport group—with well over 100 participants—since its inception about 14 years ago. She also facilitates the LCA telesupport group for parents of children with this rare genetic disease. 

In her spare time, she enjoys traveling with her husband (Portugal and Italy are favorite destinations), gardening, reading and visiting our 5 grandchildren—ages 2 through 15 and living in 4 different states. 

Ms. Millman is very proud to be a part of LighthouseGuild’s services to parents and empowering them to be effective advocates for their children. 


Past Sessions:

Albinism and Self Esteem
Lee-Anne Thompson

There are a number of factors that contribute to self-esteem and how we value ourselves as we go about our lives. This is something that parents think about across all stages of their child’s life regardless of an albinism diagnosis. Having a child with albinism can add other concerns related to self-esteem. Join this call as Lee-Anne Thompson shares her personal and professional experiences around navigating self-esteem and resiliency as a person with albinism and social work student


The Many Masks Parents Wear
Sheila Adamo

During this fall season, many of us are planning costumes and participating in fall festivities.  Join this call to have an honest discussion about the many different ways we represent ourselves as parents, partners, friends, professionals and advocates.  We will explore how our interactions are influencing our mental health and the messages they are sending our children.  


Transitioning to College
Susan M. Dalton, M.S.Ed., CVRT

When you and your child with albinism are planning on what college to attend, it is important to understand the factors around services and accommodations in secondary education. Is your child prepared to transition into college as their own advocate in pursuit of their personal and professional goals?  Join this call as Sue Dalton shares her professional experiences on things to consider and the ways you can prepare your child to be successful in college.


Career Panel of Adults with AlbinismKris Elliot Baker, Shelly Francis, Becca Evans, and Rosalind Watkins

This call will host a panel of adults with albinism that will share their experiences as a person living with albinism along with their career choices. 


Adapting to AlbinismSheila Adamo

This session will provide an opportunity for parents whose children have been newly diagnosed, or who are still in the early years of parenting to join a community that will share and learn about adapting to the new role of a parent of a child with albinism.  The session will be full of valuable information on dealing with the varied emotions and the challenges presented to a parent, as well as provide tools and strategies that will assist parents and families. Join us to begin building your own support community of parents that completely understand and are willing to support each other.


Albinism and the EyeDr. Rick Thompson

Dr. Thompson will provide a brief summary of albinism and the eye and then he will be available for questions.


Getting You and Your Visually Impaired Child Ready for a Successful School Year  –  Nancy Doyle

This presentation will provide parents with some helpful tips when either returning to school or starting school for the first time. Tips will include some simple strategies and useful resources to make the transition easier for parents, children, and teachers.


Creative and Practical Tips for Returning to SchoolSarah Venn

Sarah Venn will present information from her own experience, as well as ideas from other parents that have navigated through the transitions of starting a new school or moving into a new classroom. Join us for a lively discussion that we will support each other and share our own experiences.


Families with Young Children with Albinism

This session will provide an opportunity for parents whose children have been newly diagnosed, or who are still in the early years of parenting, to join a community that will share and learn about adapting to the new role of a parent of a child with albinism.  Join us to begin building your own support community of parents that completely understand and are willing to support each other.


The Parent Balancing Challenge
Sheila Adamo L.C.S.W., C.A.D.C.

Balancing self-care and the responsibilities of our family is a very complicated and challenging task.  Join us for this call to get ideas and support on the life long process of taking care of the needs of our children, as well as making sure we take care of ourselves.


Parenting a Child with Albinism
Dr. Niya Miller

Join us as our Dr. Niya Miller, a NOAH Parent Liaison and advocate who participated in a TedX Talk in May, will share her journey and her thoughts on parenting a child with albinism and how she got to the point of publicly speaking about albinism and parenting. She will share how she prepared for the talk with her son, and how parenting continues to be a work in progress.


Transitions –  Early Intervention to Preschool and Preschool into Kindergarten
Dr. Linda Gerra

Please join this call where Dr. Gerra will present important information and goals for you and your child to manage the transitions into the different educational systems.


Parents that have Adopted a Child with Albinism
Sueanna Johnson

Join us to hear about Sueanna’s experiences growing up as an adoptive child from Seoul with albinism.


Parents of High School or College Aged Children with Albinism

Parenting a teen or a young adult with albinism can be very challenging and having a supportive group of other parents that understand can make all the difference. We will discuss how parents are handling issues of dating, school, family and peer pressure, as well as any other issue that may arise.  Please join this discussion so we can learn from each other and support one another.


Setting Appropriate Boundaries for your Child

Setting boundaries for children is a vital role of parenting which provides a safe, secure and predictable environment for a child to explore and thrive in. When a child has a special need this process can be more difficult and confusing for the parent. Doubt, fear, insecurity and misinformation can lead to inconsistent and unclear boundaries that will impact how children will respond to the world.  We will take time to explore what healthy boundaries are and how to find the right boundaries for you and your family.


Parents of Young Children with Albinism

This session will provide an opportunity for parents whose children have been newly diagnosed, or who are still in the early years of parenting, to join a community that will share and learn about adapting to the new role of a parent of a child with albinism.   Join us to begin building your own support community of parents that completely understand and are willing to support each other.


Mothers Only Discussion

This session will be an open discussion about the challenges of being a mother and issues that may arise with parenting a child with albinism. Take advantage of this rare opportunity to talk with others that understand your worries and concerns, and can share in your unique journey as a mother of a child with albinism.  No matter what age your child is, please join our community.


All About Siblings of Children with Albinism

Join this discussion where we talk about the siblings of a child with albinism and common issues and concerns that may arise.


The Home-School Connection: Building Relationships to Foster Success
Randi Ostrove, Ed.D

Little is more important in contributing to a child’s school success than the connection between home and school. It is critical for parents and teachers to partner together in order to best meet a student’s needs. But how do we make that happen? As parents, we only want what’s best for our children but how do we make our voices heard? What strategies seem to be most effective? How do we build positive relationships with our child’s teachers? And what happens when there are challenges to the relationship-building process? This call will provide insight from a presenter who has worn the hat of both teacher and parent of a child with albinism and will strive to address the home-school partnership across all grade levels. Questions and interactive discussion are welcome.


Building Resilience

Living with albinism isn’t always easy. To be happy, self-actualized adults, people with albinism and their families need to find ways to cope with and learn from the not-so-good experiences. This quality of resilience is not innate. It can be taught and nurtured in people of any age. In this session, we will discuss what makes resilient people unique and how to help yourself develop these qualities and put them into practice.


Parents of Young Children with Albinism

This session will provide an opportunity for parents whose children have been newly diagnosed, or who are still in the early years of parenting, to join a community that will share and learn about adapting to the new role of a parent of a child with albinism.   Join us to begin building your own support community of parents that completely understand and are willing to support each other.


Mothers Only Discussion

This session will be an open discussion about the challenges of being a mother and issues that may arise with parenting a child with albinism. Take advantage of this rare opportunity to talk with others that understand your worries and concerns, and can share in your unique journey as a mother of a child with albinism.  No matter what age your child is, please join our community.


Teen Panel – Living as a Teen with Albinism

Join us as a panel of teens with albinism share their personal experiences with albinism and offer a glimpse into the life of a teenager with albinism.


Calling all Fathers of a Child with Albinism!

This call is for dads of all ages to join and to share your unique concerns and experiences as  a father of a child with albinism.  If you were at the conference this summer, the dads’ group was interactive, informative and fun.  Join this call so we can bring that meeting to everyone in the albinism community.


Sports & Albinism with Donté Mickens

Learn about sports and recreation for the child with low vision so that your child can participate in local, regional and national sports & recreational events. Topics include adaptive sports, adaptive equipment, adaptive physical education, overcoming barriers, as well as creating the least restrictive environment for your child in sports & recreation. Learn how the benefits of being active transfer into our daily activities.


Dual Media and Albinism – Dr. Kelly Lusk

Please join us for this call which will focus on determining the best learning tools for your child with albinism and a discussion on the topic of braille and albinism.  Dr. Lusk will share her expertise and knowledge on this topic and will be available for questions.


Orientation and Mobility and Establishing Independence in the Teen Years – Marjie Wood

Join this call and learn strategies and tips for transitioning your child with albinism into independence and giving them the space to succeed.  Marjie is a wonderful speaker full of O&M knowledge to help guide parents during the complicated teen years. Please send in specific questions ahead of time so she can structure her presentation to meet our specific needs.  Please submit questions by October 3rd.


Connecting Families of Young Children – Sheila Adamo

Adjusting to life as a parent of a child with albinism is a unique process that, at times, can feel isolating and can leave a parent full of questions. Join this call and become part of a community that truly understands. This call will allow parents to share their questions and concerns as well as provide an opportunity to learn and support each other. We will not record this call in order to provide a safe place to share feelings.


Staying Cool as your Kids Return to School – Sheila Adamo and Jill Gorman

At this time of year parents can fell a range of emotions from pure excitement to complete fear and dread.  Starting a new class, new friends and new teachers can fill you and your child with anxiety and excitement. Come share your ideas on making the start of school a smooth transition and listen to other people share what works for them.  We will discuss strategies for you and your children to transition into the new school year smoothly.


Living with Albinism – Ed Dalton

Ed Dalton will have a candid discussion with us about growing up with albinism and share with us his story about creating the app for visually impaired music lovers.     www.airturn.com


The NOAH Conference Experience – Mike McGowan, NOAH Executive Director

Join us for a call with Mike McGowan, NOAH’s Executive Director, and other Parent Connection members as they bring the highlights of the NOAH conference home to you. They will also be available to answer your questions regarding any new information or presentations at the conference. If you attended the conference, please join us to share your own highlights and experiences.


Reflecting on “Moments” – Judi Duffey

Join us for our guest speaker Judi Duffey who will share her experiences and wisdom on parenting and raising a daughter with albinism, who is now a practicing medical Doctor. Judi was featured in Albinism InSight with some of her thoughts. Join us for a lively discussion on parenting and children with albinism.


Understanding Stigma and Albinism – Kenneth Southall, PhD

Join us as Kenneth Southall, PhD, addresses stigma associated with albinism, and how stereotyping, prejudices, and discrimination influence adoption and use of assistive technologies, the decision to access health care, and disclosure of stigmatizing traits.