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

Teleconferences are listed in Central Time.

Please make special note of different days and time starts.


January 12th (Saturday), 1:00 pm central time

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.


January 22nd, Tuesday, 9:00 pm central time

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.


February 12th, Tuesday, 8:00 pm central time

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.

Kelsey Thompson

Kelsey Thompson, M.S., CRC, CCM, LCPC

Kelsey Thompson is an adult with albinism who has been involved with NOAH since the age of four; she previously served for ten years on NOAH’s Board of Directors, holding positions that include Chair, Vice Chair and Secretary. Since 2011, Kelsey has worked as a Vocational Rehabilitation Counselor for the U.S. Department of Veterans Affairs at the nation’s second largest VA medical center outside of Chicago. Prior to this, she worked for five years as a counselor at The Chicago Lighthouse for People Who Are Blind or Visually Impaired. Kelsey has a master’s degree in rehabilitation counseling from the Illinois Institute of Technology and is currently pursuing a second master’s degree in Health Administration. She is a Certified Rehabilitation Counselor, a Certified Case Manager and a Licensed Clinical Professional Counselor in the State of Illinois. Kelsey is the mother of two awesome kids, wife to one awesome husband, a runner, a knitter and a Simpsons nerd.


February 26th, Tuesday, 12:00 pm central time

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.


March 4th, Monday, 7:00 pm central time

The Home-School Connection: Building Relationships to Foster Success

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.

Randi Ostrove, Ed.D. is an educational consultant and Adjunct Professor in the Department of Learning & Teaching at the Rutgers Graduate School of Education in New Brunswick, NJ. With over 20 years of experience in the field, Randi is a seasoned educator who has held teaching and educational leadership positions in a variety of diverse educational settings, including corporate childcare, Head Start, urban public schools, and a small community nursery school program, in addition to the college setting, and she has had the opportunity to work with students ranging in age from preschool through the university-level. Randi holds a doctoral degree in Early Childhood/Elementary Education from the Rutgers Graduate School of Education, where her research focused primarily on quality of care and teacher-student relationships. She has been a proud member of NOAH since her daughter was first diagnosed with albinism 16 years ago, has been a supporter of the annual NOAH bowl-a-thon for many years, and was a contributing writer to the NOAH book, Raising a Child with Albinism: A Guide to the Early Years. Randi lives with her husband, Elliot, and 2 children in New Jersey.


March 16th, Saturday, 1:00 pm central time

Mother’s 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


April 3rd, Wednesday, 12:00 pm central time

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.


April 16th, Tuesday, 8:00 pm central time

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.


May 4th, Saturday, 1:00 pm central time

Parent’s 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.


May 15th, Wednesday, 8:00 – 9:00 pm central time

Parents that have Adopted a Child with Albinism with Sueanna Johnson

Growing up as an adoptive child from Seoul with albinism.


Past Sessions


Presented on December 4, 2018

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.

Teen Panel


Presented on November 27, 2018

Calling all Fathers of a child with albinism to join this call!

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.

Parent Connections - Dads


Presented on November 7, 2018

Sport & 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.

Donté Mickens

Donté Mickens is a Paralympic medalist and member of the Men’s U.S. National Goalball team (2003-2016), competing in the Paralympics Games in Athens, Greece (2004) and Beijing, China (2008). He is from South Florida where he works as a Financial Consultant for the National Council on Compensation Insurance (NCCI). He’s a graduate of FSU where he received B.S. degrees in Finance and Risk Management and a Master’s degree in Risk Management and Insurance. Donté currently serves as the board chair for NOAH.


Presented on October 22, 2018

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.

Dr. Kelly Lusk

Dr. Kelly Lusk, PH.D. received her bachelor’s, master’s, and Ph.D. degrees from Vanderbilt University. Her bachelor’s is in French and Secondary Education, and her master’s and Ph.D. are in Special Education, with an emphasis in teaching children with visual impairments. Dr. Lusk is adjunct faculty at The Ohio State University, Marshall University, and California State University – Los Angeles, where she teaches courses in literary braille, Nemeth braille, abacus, eye anatomy, and low vision. Dr. Lusk serves on multiple professional committees and advisory boards, and has successfully testified as an expert witness in helping to provide appropriate special education services for a child with a visual impairment. Dr. Lusk has had her research published in various journals, and has presented extensively on topics including pediatric low vision, optical devices, and dual media (print and braille). She has previously worked as a French teacher, early interventionist, and an itinerant teacher of students with visual impairments (both in a public school system and with 2 statewide programs providing pediatric clinical low vision services). Dr. Lusk lives with her husband, Todd, and two daughters, Claire and Anne-Marie, in Florence, Kentucky.


Presented on October 9, 2018

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.

Marjie Wood

Marjie Wood is a certified Orientation and Mobility specialist (COMS) and Teacher for the Visually Impaired (TVI). She has over 40 years of teaching experience as a TVI for infants and toddlers and COMS for children from birth to 22 in the Austin Independent School District and at the Texas School for the Blind and Visually Impaired. For the past 9 years, Marjie has been giving workshops and presentations on various topics related to O&M for parents and colleagues from around the U.S. and Canada. She has been a subject matter expert for AFB Family Connect and has authored the chapter on Orientation and Mobility in NOAH’s parent book, Raising a Child with Albinism: A Guide to the School Years. She is currently working with other colleagues on Texas 2 Steps: An Evaluation and Curriculum from Birth to 5 which is projected to be published by fall of 2018. Marjie believes that parents are their child’s first O&M teacher and is passionate about partnering with them and helping colleagues identify early foundational skills that will help set the stage for becoming successful and productive adults.


Presented on September 27, 2018

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.

Sheila Adamo

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.


Presented on August 29, 2018

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.

Sheila Adamo
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.
Jill Gorman

Jill Gorman lives in the San Francisco Bay area with her husband, Taggart and their son Kyle, who has albinism. Jill and her family have been members of NOAH for several years hosting events in their area such as bowl-a-thons and, in 2015, a mini conference in Berkeley, CA. Jill has participated in several NOAH projects including Managing Editor of the parent book, Raising a Child with Albinism: A Guide to the School Years, the relaunch of the NOAH website, and assisting with the 2016 and 2018 national conferences. She is an active member of her community as the chair of a support group for families of children with special needs.


Presented on September 12, 2018

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

Ed Dalton

Ed Dalton is 36 and lives with his wife, Kristen, in Philadelphia. Ed studied physics & aerospace engineering as an undergraduate and recently earned a masters degree in bioengineering from Temple University. He currently works in a lab for the Department of Defense. In his free time, Ed is a runner, a musician, an app developer, and a halfway decent cook. Ed and Kristen have been renovating their century-old rowhouse for the last two years. Throughout the construction process Ed has found he has a passion for woodworking. With family outside of Chicago and Boston, Ed & Kristen have wracked up a wealth of frequent flyer miles.


Presented June 2018

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.

Mike McGowanMike McGowan has been the Executive Director of NOAH since 2010 and a person with albinism. He holds a Bachelor of Science in Political Science from Loyola University of Chicago and a Master of Science in Management of Public Service from DePaul University. He was the Director of Information Technology for the Chief Judge of the Cook County, IL Circuit Court when he retired in 2009. In addition to his duties and involvement with NOAH, Mike has served on the capital development committee and centennial committee of his church, and on his local private school board. Mike served on NOAH’s Board of Directors from 1995 – 2009 including serving as Secretary from 1995 to 1997 and as President from 2001 – 2009.  Mike has been involved in day-to-day operation and management of NOAH and all projects, activities and committees since 2001. He is also active in the Northern Illinois Chapter of NOAH. A lifelong resident of Chicago, Mike has been married for over 30 years. He and his wife Sheri have one child, a grown son, Bobby.


Presented on June 27, 2018

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.

Judi DuffeyJudi Duffey is mom to Megan, a 27 year old daughter with albinism and Hanna, a 24 year old daughter without Albinism. Judi and her husband moved to Phoenix 18 years ago so their oldest daughter would have more resources available to her. Today both daughters live in Indianapolis and have started their careers. The family has been with NOAH for 20 years and has greatly benefited from their encouragement and services.


Presented on June 11, 2018

Understanding Stigma and Albinism – Kenneth Southall, PhD

Kenneth SouthallKenneth Southall, PhD is a researcher at Institut Universitaire de Gériatrie de Montréal and Adjunct Professor in the School of Social Work at McGill University, in Montreal, Quebec, Canada. His research addresses the stigmatization associated with health conditions, and specifically how stereotyping, prejudices and discrimination influence adoption and use of assistive technologies, the decision to access health care, and disclosure of stigmatizing traits.