NOAH's Parent Connections
Parent Photo Strip
photos by: Rick Guidotti, Positive Exposure

NOAH, in partnership with Lighthouse Guild, 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.

Would you like your child to connect with others in the albinism community? Sign up for NOAH Connections for email updates about upcoming virtual meet-ups and opportunities to connect with kids their age!


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 2021

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.

Shelia Adamo

Building Family Resilience
Sheila Adamo L.C.S.W., C.A.D.C.

Monday, January 11th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

Resilience is the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress.  This call will explore and discuss what characteristics make a resilient family and provide tools that can be used to  increase your own resilience, as well as the resiliency of the entire family.

Learn more about Sheila Adamo, L.C.S.W., C.A.D.C.


young child with albinism

Parenting a Young Child with Albinism
Sheila Adamo L.C.S.W., C.A.D.C.

Friday, January 22nd
1:00PM ET // 12:00PM CT // 11:00AM MT // 10:00AM PT

This session will focus on the journey that parents take while adapting to the diagnosis of albinism in their child.  This is an opportunity for parents whose children have been recently diagnosed, or those who are still in the early years of parenting, to be part of a community that will support you and provide a path for you and your child.  We will discuss adapting to the diagnosis of albinism and provide a space to deal with questions and concerns that may have arisen.  

Learn more about Sheila Adamo, L.C.S.W., C.A.D.C.


Parenting Teens with Albinism
Sheila Adamo L.C.S.W., C.A.D.C.

Thursday, February 11th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

Join this call as we have an open discussion on the triumphs and challenges of successfully parenting a teen with albinism.  We will discuss strategies to address the unique social, emotional and educational needs our children are being confronted with on a daily basis.  

Learn more about Sheila Adamo, L.C.S.W., C.A.D.C.


Sue Dalton

Transitioning to College for Teens and Parents
Susan M. Dalton, M.S.Ed., CVRT

Thursday, February 25th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

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. 

Learn more about Susan Dalton, M.S.Ed., CVRT 


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.


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 special needs children. 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.

Susan 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 the 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.


Past Sessions:


Fathers of Children with Albinism

This call is for dads of all ages to join and to share the joys and challenges we experience as a father of a child with albinism. Join this group to ask questions or just listen to others on their journey to being the best dad they can be for our kids with Albinism. 


Setting Appropriate Boundaries
Sheila Adamo L.C.S.W., C.A.D.C

Boundaries provide a safe, secure and predictable environment for a child to explore and thrive in.   Knowing where to set a boundary and how to enforce it can be very difficult and oftentimes our own fears and insecurities get in the way.  Join us for this session when we will take time to explore what healthy boundaries are and how to find the right ones for you and your family.  For families with children of all ages.


Parents of Young Children with Albinism
Sheila Adamo L.C.S.W., C.A.D.C

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 ask questions, share stories, or just to listen in a community of parents that truly understand. This session is not recorded.


Lions and Tigers and Bears! Oh My! Early O&M from Birth to Pre-School 
Marjie Wood, M. Ed., COMS

Looking to the future when one has a young child with albinism can often be filled with angst and doubt. Every parent wants their child to grow up and become a self-sufficient, self-confident and happy adult. This session will help parents understand the importance of early O&M skills, what they are, and how these skills can be incorporated throughout a child’s daily routine to begin that road to adulthood.


Panel of Parents of Children with Albinism

A panel of parents of children with albinism will share their personal stories and will answer your candid questions. This promises to be a lively, informative and wide-ranging discussion of interesting topics.


Preparing for a Successful Return to School Online or In Person
Kathi Garza, M.Ed., TVI, & Jill Gorman

The session will assist parents on managing the return to school while meeting the needs of your child with albinism in the virtual or in person classroom by providing a place to brainstorm and ask questions to the educational team as well as other parents. This is a challenging time for all of us and we can all learn and support each other.  


Positive Exposure
Rick Guidotti

This session will feature Rick Guiotti and provide an opportunity to speak with him and share in his passion for changing the world. Learn how he is helping spread his message “Change what you see, see how you change.” For more information on Rick check out his website at https://positiveexposure.org/


Adapting to Albinism
Sheila Adamo L.C.S.W., C.A.D.C.

This session will focus on the journey that parents take while adapting to the diagnosis of albinism in their child. This is an opportunity for parents whose children have been recently diagnosed, or those who are still in the early years of parenting, to be part of a community that will support you and provide a path for you and your child. We will discuss adapting to the diagnosis of albinism and provide a space to deal with questions and concerns that may have arisen.


NEW! Better Together NOAH Community

It is time to come together and use the power of the Albinism Parent Community to share our triumphs and our challenges over the past few months.  We can laugh and learn with each other as we discuss our successes and challenges.   Parents of kids of all ages are encouraged to attend!


Psychosocial Experiences of Living with Albinism
Kelsey Thompson, M.S., CRC, CCM, LCPC

Join us for this call when Kelsey will outline some of the many psychosocial experiences of living with albinism.  Using her personal and professional background she will discuss how adults with albinism interact with the world, how the world interacts with them, and what parents can do to support their kids with albinism throughout their journey.


A Parent’s Journey
Tikia Kidd

Tikia Kidd, an African-American, is the mother of two amazing children, a girl (9) and a boy (8). She is a dedicated early childhood educator, a wife to a loving husband of 15 years, and the owner of an educational consulting company. Tikia’s son is the first person from either side of their family to be diagnosed with Albinism. Her daughter does not have Albinism, but is just as special as her son. When their son was born she and her husband had to quickly educate themselves on Albinism and how to best meet his needs. NOAH has been a huge resource for the Kidd family. Tikia has hosted 6 NOAH Bowl-a-Thons, 5 NOAH Fall Play Dates, and served as a Parent Liaison for NOAH.  Over the past two years Tikia has facilitated multiple Albinism awareness workshops for the entire staff at her children’s school. Tikia has taken on the task of educating her local community and organizations about Albinism in an effort to create normalcy around such a rare condition. Please join her on a NOAH Parent Connections call as she shares her story and answers questions.


Dealing with Comments and Questions
Sheila Adamo

Parents will examine how to deal with comments and questions regarding albinism from others that will include humor, sarcasm, anger and honesty.  Parents will analyze their own patterns of responses to others and explore ways of responding that will both honor their own feelings and enable them to serve as a role model to their children.


Adapting to Albinism
Sheila 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.


NOAH and the National Conference
Mike McGowan

This call will provide you with an opportunity to connect with and learn about NOAH’s Executive Director, Mike McGowan. We will also discuss the NOAH National conference and provide tips for first time attendees as well as answer any questions that you may have about attending


Low Vision Driving
Chuck Huss

This presentation will provide an overview of some of the key sections contained within Chapter 14, titled “Low Vision Driving” in the NOAH parent book – Raising a Child with Albinism: A Guide to the School Years. The latter will include but not be limited to: decisions and reasons to drive, vision and other requirements for driving, and expectations (pre and post licensure). These areas of knowledge and interest are applicable for both children with low vision who want to explore the driving privilege, along with their parents. 


Understanding HPS
Donna Appell

Discussing Hermansky-Pudlak Syndrome (HPS), a rare form of albinism,  can be difficult and this call will provide a safe and supportive platform to learn all about HPS and how to get screened. This call will address accurate diagnosis and treatment as well as ongoing research and provide time for your questions.  NOAH encourages all people with albinism to be screened for HPS and this call will lead you in the right direction.


Parents with Young Children
Sheila 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.   Join us to ask questions, share stories, or just to listen in a community of parents that truly understand. This session is not recorded.


Establishing Independence – Teens and Adults
Daria Zawadzki

Daria will speak candidly from her personal and professional experiences while providing tools and strategies that are helpful for teens and parents when establishing independence and preparing to enter into adulthood.  Both teens and parents are welcome on this call that will provide a starting point for developing a plan and provide assurance for the entire family.  

Daria is currently facilitating two groups for teens with visual impairments that discuss teen issues and college readiness. 


Parenting a Child with Albinism
Dr. Niya Pickett Miller

Join us as Dr. Niya Miller returns by popular demand to continue to discuss 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.  Dr. Miller participated in a TEDx Talk in May 2019 that you can listen to before the call. She will share how she prepared for the talk with her son and be available for questions about her talk.


A Parent’s Journey
Linda Hughes

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!”


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.