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.


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 2020

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

**Date Change!**

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

Monday, October 12th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

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.

Learn more about Sheila Adamo

Father with his daughters

**Date Change!**

Fathers of Children with Albinism

Thursday, October 22nd
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

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. 

Adoptive Parents of Children with Albinism

Thursday, November 5th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

Join this call as two of our parents liaisons, Anne Contant and Jackie Gerstner share their stories and have an open discussion about their triumphs and challenges of adoption and albinism.  This will be an open discussion meant to provide a safe place to ask questions and to connect with other parents that truly understand. 

NOAH moms

Mothers of Children with Albinism

Wednesday, November 19th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

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.


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.

An Inspirational Journey
Presented by Isaac Lidsky

Mon, October 19, 2020
8:30 PM – 9:30 PM EDT


This presentation is appropriate for anyone who is striving to overcome the challenges of vision loss in their lives.

In his talk, Isaac explains the powerful insight that inspired him to achieve his most ambitious dreams despite losing his sight to a blinding disease: it isn’t external circumstances, but how we perceive and respond to them, that governs our reality. For example, fear can give us tunnel vision—we fill the void of the unknown with our worst imaginings and cling to the familiar. But when we face new challenges, it’s most important for us to recognize the complexity and uncertainty of the situation, and to avoid falling prey to our emotions. Isaac’s story is not about sight or blindness, it is about vision. Our perspectives are limited by our past experiences, biases, and emotions. Lidsky explains how to confront paralyzing fears; challenge our assumptions and faulty leaps of logic; silence our inner critic; correct our misconceptions about luck, success and weakness; understand and harness our strength; embrace change and live with open hearts and minds. In sharing his hard-won insights, Lidsky shows us how we too can confront life’s trials, personally and professionally, with initiative, grace and an innovative spirit—and move forward with an empowering, new vision.

Isaac Lidsky is an American corporate speaker, entrepreneur, author.  Before losing his sight he played Weasel on NBC’s Saved by the Bell:  The New Class.  He graduated from Harvard Law School and was the first person with blindness to serve as law clerk on the Supreme Court.  He is the CEO of a construction services company and founded Hope for Vision, a non-profit that funds treatments and cures for blindness and visual impairments.

For more information and a link to his tedtalk and books he has written please follow this link:   http://www.lidsky.com/


Learn More About Our Call Hosts:

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.

Listen to Dr. Niya Pickett Miller’s TEDx Talk from May 2019:
Let’s speak with care and consideration of our differences

Daria Zawadzki attended New World High School of the Arts in Miami, FL as a piano major and then went to receive her BA from Harvard University, graduating cum laude with a degree in Psychology in 1996.  She completed her MSW from Columbia University School of Social Work, licensed clinical social worker in 1998. In addition, Ms. Zawadzki graduated from Fordham University School of Law in 2001 and she is  licensed to practice law in the state of NY. She was an elementary school counselor for many years and has been running support groups for the Lighthouse Guild for over a decade. She is a mother of two teenagers, ages 14 (Jack Milo) and 15 (Dune Rose) and married her college sweetheart, Joe.

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..

Donna Appell, RN is a Registered Nurse and serves on NOAH’s Board of Directors as well as NOAH’s Board of Scientific Advisors. The mother of a child with albinism, Donna is also the founder and president of the HPS Network. She has served as Chairperson of the Public Advisory Roundtable of the American Thoracic Society and received the Innovation in Health Equality Award for work in Puerto Rico regarding HPS lung disease. Ms. Appell and the HPS Network were featured in the documentary RARE by Stanford University, broadcast on PBS, and used frequently as medical curriculum. Her work in advocating for families with special needs children spans two decades. Her past clinical experience was working in an Intensive Care Unit for 22 years.

Chuck Huss, C.O.M.S. received his Master of Arts degree in Orientation and Mobility from Western Michigan University in 1976. For the past 36 years, he has been employed with the West Virginia Division of Rehabilitation Services, Charleston, WV. Mr. Huss is nationally known for his work and expertise in the area of formalized bioptic driver training and assessment over the past 34 years. Currently he is one of three (3) full-time staff assigned to WV Bioptic Driving Program. The latter program, which was re-started in July, 2009 after passage of WV House Bill 4139, operates under the auspices of the WV Division of Rehabilitation Services, in collaboration with the WV Division of Motor Vehicles. Mr. Huss was the recipient of Ambrose H. Shotwell Award presented at the 2012 AER International Conference in Seattle, Washington; for his years of service and professional advocacy efforts revolving around “bioptic driving”. Mr. Huss was also a 2014 recipient of one of NOAH’s Distinguished Service Awards.

Mike 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.

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 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, the development of the NOAH SchoolKit and assisting with national conferences starting in 2016. She served for eight years as the chair of a community support group for families of children with special needs and continues to be an active member of her community. Jill currently is the Development Associate at Bay Area Outreach & Recreation Program (BORP), a nonprofit that provides sports, fitness and recreation programs for people with physical disabilities.

Kathi Garza M.Ed TVI lives in Austin, Texas with her son Keegan. She is a Certified Teacher of Students with Visual Impairments and works as a Family Engagement Coordinator in the Outreach Department of Texas School for the Blind and Visually Impaired. Kathi has worked at TSBVI for the last 11 years, and while her current role is to support families across the state of Texas, she has experience teaching in a classroom setting and with Short-Term Programs. Kathi has volunteered with NOAH over the years by contributing to Albinism Insight, coordinating events in her area, and helping to develop the NOAH SchoolKit resource for families. Kathi has served on the planning committee Adult Weekend and collaborated on the Kids Conference portion of the NOAH Conference in 2016 and 2018.

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.

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 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. 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 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.

Angel Pacheco has worked for the Lighthouse Guild for over 32 years and currently supervises both the Assistive Technology Center and the Adaptive Living Program at the Lighthouse.  He has over 2 decades of experience with assistive technology and 3 decades with computers.  

Dr. Joy Harris serves as Executive Director of the Council of Schools and Services for the Blind (COSB). She entered the field of blindness education three years ago after obtaining an MBA with a focus in sustainability and nonprofit management. Her work aims to increase financial viability for mission-driven organizations. Her passion is providing the best possible education for every child.

Spandana Nallapati, MD, currently works as a Developmental Behavioral Pediatrician at Children’s Specialized Hospital in Jersey City, NJ.  Dr. Nallapati graduated from Ross University Medical School in 2012 and completed her pediatric residency in Brookdale Hospital in Brooklyn, NY.  While relatively new to the industry, Dr. Nallapati is quickly finding that being an advocate for patients and their families is one of her greatest passions, especially those from inner city neighborhoods.  In her time outside of work she shares a love of scuba diving, gaming, hiking, traveling and food with her husband.

Donté Mickens is a Paralympic medalist and former member of the Men’s U.S. National Goalball team. He competed 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). Donté is a graduate of FSU where he received B.S. degrees in Finance and Risk Management and a Master’s in Risk Management and Insurance. Donté currently serves as Board Chair for Lighthouse for the Blind of the Palm Beaches and the National Organization for Albinism and Hypopigmentation (NOAH). 

Kim Avila, PhD, COMS is the professor-in-charge and coordinator of the Virginia Consortium for Teacher Preparation in Vision Impairment at George Mason University. She has extensive experience working with individuals with blindness and visual impairment of all ages and served as a teacher of students with visual impairments, orientation and mobility specialist, accessibility specialist, and early intervention service provider. Kimberly’s research, publications, and presentations have focused on pedestrian safety issues that affect persons with visual impairments, braille literacy, transition, methods to promote developmental growth, IEP and accommodation advocacy and she has collaborated extensively on policies affecting the blindness population. 

Anne Corn, Ed.D. is professor emerita from Vanderbilt Universities where she held appointments in both Special Education and in Ophthalmology. She has come out of retirement to become a volunteer research professor at the University of Cincinnati. Anne’s research focused on the functional use of vision, early braille reading, and the needs of teens and young adults. Her second area of exceptionality is the education of children who are gifted, for those with and without disabilities. She is a former member of the Board of Trustees of the Texas School for the Blind and Visually Impaired. Anne also serves on the NOAH Scientific Advisory Board. Anne has had more than 45 years as a teacher of children with visual impairments, a teacher educator, writer, researcher, and advocate for children who have low vision. She is also an individual with congenital low vision.

Over the years, Marjie Wood, TVI, COMS has experienced first-hand the obstacles that have plagued the field of O&M with her involvement in the professional organizations of American Association of Workers for the Blind (AAWB) and Association for the Education of the Visually Handicapped (AEVH) and later on in the International Association of Education and Rehabilitation for the Blind and Visually Impaired(AERBVI) and the Texas chapter of AER.  She has taught O&M to adults at the Sunrise Project and Texas Commission for the Blind and children from birth to 22 at the Texas School for the Blind and Visually Impaired and as an itinerant for school districts in Austin, Georgetown and Leander for over 40 years. She currently serves as an O&M consultant to parents and teachers around the U.S.


Past Sessions:


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.