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.

Creative and Practical Tips for Returning to School
Sarah Venn

Wednesday, August 7, 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

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.

Learn more about Sarah Venn

Albinism and the Eye
Dr. Rick Thompson

Tuesday, August 27, 2019
1:30 – 2:30 PM ET // 12:30 – 1:30 PM CT // 11:30 AM – 12:30 PM MT // 10:30 – 11:30 AM PT

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

Learn more about Dr. Rick Thompson

Shelia Adamo

Adapting to Albinism
Sheila Adamo

Tuesday, September 10, 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

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.

Learn more about Sheila Adamo

Veterinarian, Dr. Sydney LaRue

Career Panel of Adults with Albinism
TBA

Tuesday, September 24, 2019
9:00 – 10:00 PM ET // 8:00 – 9:00 PM CT // 7:00 PM – 8:00 PM MT // 6:00 – 7:00 PM PT

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.  if you have questions for the panel, please send them to sadamo@albinism.org  so I can share them with the panel.

Pictured: Dr. Sydney LaRue – Veterinarian

Sue Dalton

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

Tuesday, October 8, 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

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 Sue Dalton


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.

Guest Speaker – Nefertiti Matos

RESCHEDULED – new date/time TBA

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

Nefertiti Matos is a technical expert at the Andrew Heiskell Braille and Talking Book Library in NYC, and who is blind herself, will speak about her personal success, as well as the offerings and development of the Heiskell Library. The library offers services to people who live out-of-state as well. Please join us for this dynamic and informative presentation.

Learn more about Nefertiti Matos


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.

Dr. Niya Pickett Miller is an Assistant Professor of Communication at the historic Tuskegee University. Her scholarship focuses on the visual rhetorical criticism of marginal identities. Currently, she is exploring how individuals with albinism, a rare genetic condition, are communicatively framed in media.

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

Nefertiti Matos is an Assistive Technology Trainer for the New York Public Library’s Andrew Heiskell Braille and Talking Book Library in New York City. In this role, Nefertiti provides one on one technology coaching, creates programming, and facilitates group workshops on a range of tech topics for the blind and visually impaired community in both English and Spanish. She is passionate about her work and committed to bringing about diversity, equity and inclusion in all things through her advocacy efforts. Nefertiti graduated Summa Cum Laude from Empire State College, is a two-time recipient of the prestigious National Federation of the Blind National Scholarship, was featured in the acclaimed Blind Date Documentary short, and is a highly-regarded subject matter expert on cultural accessibility. She loves the arts, spending quality time with family and friends and communing with nature.

Sarah Venn is a mother of 4 daughters including a child with albinism. She attended East Carolina University where she received a bachelor’s degree in Psychology and Child Life and a Masters degree in Child Development and Family Relations. Prior to motherhood, Sarah worked with hospitalized children as a Child Life Specialist.  Sarah is also very active in the Albinism community as a Parent Liaison and as a loyal fundraiser.

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.


Past Sessions:

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.