Grandparent Connections Newsletter

Hello Everyone,

Welcome to the August edition of the Grandparent Connections Newsletter! Our next teleconference is just around the corner. We hope you will be able to join us as we hear from Sue Dalton about services you can expect to be available to your grandchild with albinism.

In between teleconferences you can still connect with grandparents through our Grandparent Connections Facebook group. If you’re on Facebook, please consider joining this closed group by requesting membership at NOAH – Grandparent Connections.



August Tips of the Month:

It is back to school month and as our grandkids get ready to go back to school or transition into school for the first time please take a few minutes to read these tips to help make this process as smooth as possible.

  • During this busy time of year it may be helpful to ask the parents what they may need help to ease the transition back into school. Shopping, errands, watching the grandchildren, a compassionate ear to listen and getting the child excited for school may be on the list. You may want to offer to volunteer at the school or attend a school meeting once school has begun. If you are a long distance grandparent, a phone call and some support will go a long way for both the grandchild and the parent.
  • It may also be helpful to familiarize yourself with the information NOAH provides to assist parents and teachers of children with albinism listed below. 

NOAH SchoolKit

NOAH SchoolKit

The NOAH SchoolKit provides information and resources to guide parents and caregivers in supporting general education teachers when a student with albinism will be in their classroom. The kit is divided into five sections with instructions and suggestions on how to use the information within it. Sections include informational sheets for teachers, documents to help guide conversations between parents / caregivers and educators and templates for student involvement in conversations and advocacy.


IEP, IFSP, 504 plan

NOAH CARE Project

Children with albinism have different visual acuities, functional vision levels and personal developmental needs. The NOAH CARE Project (Create Albinism Resource for Education) provides resource information to aid in formulating your child’s education documents (IFSP, IEP or 504 Plan). At the CARE Project website, you can find information on grade level goals, assistive technology recommendations, Orientation & Mobility objectives and social development objectives.


Photo Collage of Grandparents with their Grandchildren

Grandparent Spotlight

If you would like your family/grandchildren featured in one of our newsletters please email grandparents@albinism.org to tell us about your family, and share one (or more) pictures. 


Upcoming Grandparent Connections Calls 2019

We are also excited about the upcoming schedule. Please note the day and times of the calls are different.

Sue Dalton

Monday, August 5th, 12:00 PM CT

Overview of Services from Birth Through Independence – Sue Dalton

*Please note the time of this call has changed*

Join us for this call as Sue will give an overview of what to expect and what services your grandchild with albinism will receive throughout their development. Sue will share her personal and professional experiences while providing valuable information on vision services, orientation and mobility, along with providing suggestions for how grandparents can help with the major transitions in their grandchild’s life.


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


Kris Baker, Nancy Lee, and Kristen Dalton

Tuesday, November 5th, 12:00 PM CT

Career Panel of Adults with Albinism – Kris Elliot Baker, Nancy Lee, and Kristen Dalton

This call will host a panel of adults with albinism that will share their experiences along with their career choices. If you have questions for the panel, please send them to Sheila at sadamo@albinism.org, and you may hear the answers as you tune-in to this call.


Kris Elliot Baker

Kris Baker is an Instructor of Music Theory and Composition at Brookhaven College School of the Arts. She is also a photographer, serving on the creative team for a large online based photography community.


Nancy Lee

Nancy Suarez Lee retired after 30 years of service in Human Resources. She holds a masters degree in human resources and is a certified Senior Professional in Human Resources. Bilingual in Spanish and English, Nancy was born in New York City and is the daughter of native Puerto Rican parents. She resides in Texas with her husband, Dave. The Lees have four children and six grandchildren.

Nancy has the Hermansky Pudlak Syndrome (HPS) type of albinism. In September 2011, Nancy underwent a double lung transplant as a result of pulmonary fibrosis caused by HPS. Most recently, Nancy became a certified Zumba instructor!

Nancy serves on the board of the HPS Network and is a member of the editorial team for Albinism Insight, NOAH’s quarterly magazine.


Kristen Dalton

Kristen Dalton is a longtime NOAH member and pediatric oncology nurse practitioner. In her spare time, Kristen enjoys experimenting with makeup, renovating her 100+ year old fixer upper, and running long distances. She loves sharing her experiences growing up and living with albinism with teenagers and parents of young children.