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.


The Young Family

Parents of Young Children with Albinism

Wednesday, April 3, 2019
1:00 PM ET // 12:00 PM CT // 11:00 AM MT // 10:00 AM PT

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.

Photo: family with two young children with albinism


Father with his daughters

Setting Appropriate Boundaries for your Child

Tuesday, April 16, 2019
9:00 PM ET // 8:00 PM CT // 7:00 PM MT // 6:00 PM PT

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.

Photo: father with his daughters


NOAH Member Christian F at his desk

Parents of High School or College Aged Children with Albinism

Saturday, May 4, 2019
2:00 PM ET // 1:00 PM CT // 12:00 PM MT // 11:00 AM PT

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.

Photo: teen student at his desk


Newly Adopted Kids with their Families

Parents that have Adopted a Child with Albinism
Sueanna Johnson

Wednesday, May 15, 2019
9:00-10:00 PM ET // 8:00-9:00 PM CT // 7:00-8:00 PM MT // 6:00-7:00 PM PT

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

Learn more about Sueanna Johnson

Photo: adopted kids with their families


Learn More about our call hosts:

Sueanna Johnson was adopted when she was three from Seoul, South Korea, and has lived in Denver, Colorado for majority of her life.  Her parents, John and Karen, are retired school teachers and she has five siblings: two biological children to her parents and three adopted siblings (Navajo Indian brother and African-American/Caucasian brother and sister).  She is thirty-eight years old, married to a wonderful husband, Matthew, and has two beautiful children, Evelyn (7) and Henry (2). Sueanna works at the Colorado Attorney General’s Office and represents the Colorado Division of Securities in securities fraud matters.  She also handles general counsel work for two other state agencies and has been practicing law for approximately fifteen years.  Outside of work, she enjoys reading, running, and baking, as well as spending time with her family.


Past Sessions:

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.