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Parent Connections

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.

Would you like your child to connect with others in the albinism community? Sign up for NOAH Connections for email updates about upcoming virtual meet-ups and opportunities to connect with kids their age!


Enroll in Parent Connections Today!

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 this program, please fill out the brief intake form, and the Parent Connections Coordinator will contact you soon to complete the enrollment process!

Do You Know About Grandparent Connections?

We also have something special for YOUR parents! Learn more about our Grandparent Connections Teleconferences.


Upcoming Sessions 2021

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.


Sue Dalton

Transitioning to College for Teens and Parents
Susan M. Dalton, M.S.Ed., CVRT

Thursday, February 25th
9:00PM ET // 8:00PM CT // 7:00PM MT // 6:00PM PT

When you and your child with albinism are planning on what college to attend It is important to understand the factors around services and accommodations in secondary education. Is your child prepared to transition into college as their own advocate in pursuit of their personal and professional goals?  Join this call as Sue Dalton shares her professional experiences on things to consider and the ways you can prepare your child to be successful in college. 

Learn more about Susan Dalton, M.S.Ed., CVRT 


Kathi Garza M.Ed TVI and Jill Gorman

Elementary Education and Albinism
Kathi Garza, M. Ed, TVI and Jill Gorman

Thursday, March 4th
9:00pm ET // 8:00pm CT // 7:00pm MT // 6:00pm PT

This call will focus on how parents can best meet the educational needs of students with albinism during elementary school.  The speakers will be available to discuss the complicated issues that many parents are facing and provide suggestions and facilitate brainstorming ideas on the most effective ways to continue moving forward. 

Learn more about our call hosts:
Kathi Garza, M.Ed, TVI
Jill Gorman


Early Intervention: Preschool and Albinism
Kayla Hamlin

Thursday, March 25th
9:00pm ET // 8:00pm CT // 7:00pm MT // 6:00pm PT 

Entering into the early intervention system and navigating into preschool and kindergarten settings can be stressful and leave parents full of questions and with doubts.   In this session, Kayla will discuss the challenges, provide tools, and provide strategies to help parents be more successful throughout this journey.

Learn more about Kayla Hamlin


Donna Appell

What You Need to Know About HPS
Donna Appell, RN

Friday, April 9th
3:00pm ET // 2:00pm CT // 1:00pm MT // 12:00pm 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, RN.


Shelia Adamo

Parents that have Adopted Children with Albinism
Sheila Adamo, LCSW, CADC

Monday, April 26th
1:00pm ET // 12:00pm CT // 11:00am MT // 10:00am PT

Join this call to share stories and have an open discussion about 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.  

Learn more about Sheila Adamo, LCSW, CADC.


NOAH moms

Mothers Only

Wednesday, May 5th
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.


Father with his daughters

Fathers Only

Thursday, May 20th
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.


Lighthouse Guild Monthly Calls

lighthouse guild logo

NOAH Parent Connections works in partnership with The Lighthouse Guild to provide Parent Connections to the albinism community.  In addition to the bi-monthly Parent Connection groups, the Lighthouse provides monthly informative presentations that are created to assist all parents of children with visual impairments.  As a Parent Connections member, you will receive the information each month about this presentation. To learn more about the Lighthouse visit: https://www.lighthouseguild.org/patients-families/tele-support-services/support-for-parents/parent-support-presentations/

The Lighthouse Guild also provides a monthly newsletter with resources, ideas, and a national calendar of events.  If you are interested in receiving this please register here:  https://www.lighthouseguild.org/patients-families/tele-support-services/support-for-parents/parent-tele-support-group-enrollment/

Lighthouse Guild Presents: Preparing for College and Scholarships

Monday, February 15, 2021 7:30PM – 8:30PM CT 

Preparing for college is an exciting time for many students but navigating the scholarship and financial aid process can seem overwhelming. During this presentation, Gordon Rovins will provide information and resources about the college application process, financial aid programs, and scholarship opportunities available to students with visual impairment.

Gordon Rovins, MS, CEAC, Director of Special Programs has been with Lighthouse Guild and Jewish Guild Healthcare for over 30 years. As Director of Special Programs, he oversees the LGI scientific awards programs (Bressler Prize and Pisart Award) and the LGI college scholarship program. He is a Certified Environmental Access Consultant (CEAC) with an expertise on the Americans with Disabilities Act, the Federal Fair Housing Act and construction practices pertaining to accessibility. He received his MS degree in Environmental Psychology from Polytechnic University and has over 35 years’ experience working with people with disabilities.

Register Today!


Learn More About Our Call Hosts:

Sheila Adamo, LCSW, CADC is a Licensed Clinical Social Worker with an additional certification in Alcohol and Drug Abuse Counseling. She is currently providing individual, couple and family therapy in private practice as well as is the co-owner of Building Parent Connections which provides education, guidance and support to parents of children with special needs. Ms. Adamo served on the NOAH board of directors for eight years and as board chair for two years, and currently manages NOAH’s New Parent Program, Parent Connections and Grandparent Connections.  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.   

Susan Dalton, M.S.Ed., CVRT is a Certified Vision Rehabilitation Therapist, currently on the faculty of Northern Illinois University’s Department of Special and Early Education. She has worked as a developmental therapist, teacher of the visually impaired and most recently directed a transition program for teens in Illinois for 17 years. The parent of three adult children, two who have albinism, Sue has walked the path of transition many times and appreciates the uniqueness of every child in this exciting and challenging experience.

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.

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.

Kayla Hamlin is a teacher certified in grades PreK-5 in the State of Ohio. She has a Master’s Degree in Instruction and Design in Education, is a certified Teacher for the Visually Impaired, and is a Certified Orientation and Mobility Specialist.  Kayla has been teaching Kindergarten and First grade for 9 years and currently teaches Kindergarten and first grade at the Ohio State School for the Blind.  Kayla lives in Ohio with her husband and 2 children, her oldest has albinism.  She aided Help Me Grow, an early intervention program, to establish vision services for her son. Kayla also has navigated the early intervention field as well as the transition to school as a mom and helps others as a professional in the field. 


Past Sessions:


Fathers of Children with Albinism

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. 


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

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.


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.