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 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.

teens attending the NOAH conference

Establishing Independence – Teens and Adults
Daria Zawadzki

Wednesday, January 22nd
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

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.  If you have questions or are interested please reach to Daria at dariazawadzki@hotmail.com.

Learn more about Daria Zawadzki

Shelia Adamo

Parents with Young Children
Sheila Adamo

Wednesday, February 5th
1:00PM ET // 12:00PM CT // 11:00AM MT // 10:00AM 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 ask questions, share stories, or just to listen in a community of parents that truly understand. This session is not recorded.

Learn more about Sheila Adamo

Donna Appell

Understanding HPS
Donna Appell

Thursday, February 13th
1:00PM ET // 12:00PM CT // 11:00AM MT // 10:00AM PT

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.

Learn more about Donna Appell

Chuck Huss

Low Vision Driving
Chuck Huss

Tuesday, March 10th
1:00PM ET // 12:00PM CT // 11:00AM MT // 10:00AM PT

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. 

Learn more about Chuck Huss

Mike McGowan, NOAH Executive Director

NOAH and the National Conference
Mike McGowan

Wednesday, March 18th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

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.

Learn more about Mike McGowan

Kathi and Jill

Education and Albinism
Jill Gorman and Kathi Garza

Wednesday, April 15th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

This session will provide helpful information, tools and guidance on how to effectively manage the educational system for your child with albinism.  Jill and Cathy will explain the tools they have created on NOAH schoolkit (www.albinism.org/schoolkit/) and allow time for questions and discussion. 

Learn more about the call hosts:
Jill Gorman
Kathi Garza, M.Ed. CTVI

Shelia Adamo

Adapting to Albinism
Sheila Adamo

Tuesday, April 21st
1:00PM ET // 12:00PM CT // 11:00AM MT // 10:00AM 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

Shelia Adamo

Dealing with Comments and Questions
Sheila Adamo

Thursday, May 7th
1:00PM ET // 12:00PM CT // 11:00AM MT // 10:00AM PT

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.

Learn more about Sheila Adamo

Tikia Kidd

A Parent’s Journey
Tikia Kidd

Wednesday, May 27th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

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.

Kelsey Thompson

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

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

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.

Learn more about Kelsey Thompson


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.

Utilizing Adaptive Technology for Children with Visual Impairments
Angel Pacheco

Monday, January 20th
8:30 – 9:30 PM ET // 7:30 – 8:30PM CT // 6:30 – 7:30 PM MT // 5:30 – 6:30 PM PT

Join us to discuss the latest technology with Apple, Alexa and Microsoft systems that are most accessible to assist the visually impaired in everyday tasks. 

Learn more about Angel Pacheco

Developing the Life Skills Required for Self Advocacy
Dr. Joy Harris

Monday, February 17th
8:30 – 9:30 PM ET // 7:30 – 8:30PM CT // 6:30 – 7:30 PM MT // 5:30 – 6:30 PM PT

One of the most important skills our visually impaired children can learn is the ability to advocate for themselves. Self-advocacy will help them improve performance in school, in their careers, and throughout their lives. You can help your child learn self-advocacy by taking advantage of an amazing opportunity: The COSB Advocacy Day. During Advocacy Day, hundreds of people will travel to Washington DC to educate Congress about the benefits of the Cogswell-Macy Act. This Act will help improve education and provide more resources for blind and visually impaired children. The skill set of self-advocacy and the Cogswell-Macy Act will be the focus of my presentation. 

Learn more about Dr. Joy Harris


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, 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 national conference. She is an active member of her community as the chair of a support group for families of children with special needs.

Kathi Garza is an adult with albinism living in Austin, Texas. She is a Certified Teacher of Students with Visual Impairments and works in Short Term Programs at Texas School for the Blind and Visually Impaired. She has helped to organize many NOAH events in Austin, including Bowl-a-thons and a mini conference. Kathi is a staff writer for Albinism InSight and assisted with children’s programming at the 2016 national conference in Pittsburgh. Aside from teaching and presenting at conferences for other professionals in the field of visual impairment, Kathi’s passions include working with families and helping to spread awareness about albinism. She also enjoys working with students who have multiple disabilities and their families.

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.


Past Sessions:

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.