Grandparent Connections Teleconferences
The journey of grandparents of children with albinism is unique, and meeting others who are on the same journey can be very difficult. Grandparent Connections provides grandparents of children with albinism a place to connect and share their experiences with one another. Through a series of teleconferences Grandparents are provided an opportunity to connect with other grandparents, as well as specialists in the field of albinism from the comfort of your own home. The teleconferences are facilitated by a licensed professional and consist of a small group of grandparents. This provides a safe and comfortable environment for you to voice concerns, ask questions, share your experiences, and hear from professional guest speakers.
Interested in joining?
If you would like to participate, please to fill out this brief registration form, then watch your email for details.
Career Panel of Adults with Albinism
Kris Elliot Baker, Nancy Lee, and Kristen Dalton
Tuesday, November 5, 2019
1:00 PM ET // 12:00 PM CT // 11:00 AM MT // 10:00 AM PT
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 firstname.lastname@example.org, and you may hear the answers as you tune-in to this call.
Photo: L to R – Kris Elliot Baker, Nancy Lee, and Kristen Dalton
Learn more about our call hosts:
Sheila Adamo, LCSW, CADC
Building Parent Connections
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.
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 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 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 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.
Contact the Grandparent Connections Coordinator for access to the recordings when available.
Overview of Services from Birth Through Independence
Susan M. Dalton
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 provide tips that grandparents can do to help with the major transitions in their grandchild’s life.
Adapting to the Diagnosis of Albinism with Sheila Adamo
Join us for a discussion on the common stages parents and grandparents may experience while adapting to albinism. We will explore some typical emotions and fears many parents and grandparents experience and strategies to help the family adjust and thrive. Grandparents with grandchildren of all ages will benefit from this call, as the process of adapting is ongoing and the support we can offer one another is invaluable.
Social Aspects of Albinism with Sheila Adamo
Join us to discuss the social situations a child with albinism may face and learn strategies and tools that grandparents can use to help the entire family. Topics covered will include: building self esteem, developing good social skills, discussing albinism with your family and others, advocacy, and the importance of how you and your grandchildren see the world.
Living with Albinism – A Teen’s Perspective
A panel of teens with albinism share their personal experiences from growing up with albinism. Teens will share their own stories, struggles and successes, as well as be available to answer your questions.
How can Grandparents Help their Grandchild with Albinism in the School System?
In this call hosted by Jill Gorman and Kathi Garza, two of the creators of the NOAH SchoolKit, you’ll find the answers to your questions along with some great advice on heading back to school. 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. We will talk specifically about how grandparents can assist in the process and how to use the NOAH website.
Adapting to the Diagnosis of Albinism with Sheila Adamo
This presentation outlines the common stages parents experience while adapting to raising a child with special needs, and provides insight and suggestions on assisting your child and grandchild with this process.
NOAH’s 2018 Conference – What is it all About and How do Grandparents Fit in?
In this call hosted by Mike McGowan and Jill Gorman, we’ll discuss to expect at a NOAH conference and why you should attend. Suggestions will be provided for first time attendees, and grandparents who have attended past NOAH conferences will share their experiences and tips.
Growing Up with Albinism – Joni Vella and Mike McGowan
You won’t want to miss this practical call about growing up with albinism, where Joni and Mike cover all the questions you’ve been too afraid to ask. Our two hosts share their personal experiences growing up with albinism, answer your questions, and share how people with albinism do things that may seem impossible for people with low vision.
What is a Vision Itinerant and What Services does my Grandchild Receive? – Gianna Guskey
Gianna will outline the role of a vision itinerant and what visual aids are available for children with albinism. Gianna will share her journey as a mother of a child with albinism and the road that led her to become a Teacher of the Visually Impaired and an Orientation and Mobility Specialist.
Albinism and the Eye – Dr. Rick Thompson
During this call, Dr. Rick Thompson gives a brief outline of albinism and the eye. There will also be time for questions from the listeners. Join us to hear from a doctor who has personal and professional experience with albinism.
Dealing with Comments – Sheila Adamo
During this call, we will examine how to effectively deal with comments and questions from others about albinism. Using humor, sarcasm, honesty and anger will all be discussed in the lively, supportive call.
Panel Discussion of Young Adults and Teens with Albinism
This call will have a few young adults and teens with albinism share their experiences of growing up with albinism. This will be a wonderful opportunity for you to learn from the experts.
The NOAH Conference Experience
Join us for a call with Mike McGowan, NOAH’s Executive Director and Don Martin, NOAH Board Member and the grandfather of a child with albinism, 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.
Practical Tips for Grandparents of a Child with Albinism
Join other grandparents for this opportunity to share practical tips on being a grandparent of child with albinism. From hats and sunscreen, to coping with diagnosis of albinism as a family.
“What Types of Services Does My Grandchild with Albinism Receive?” with Susan M. Dalton, M.S.Ed., CVRT
Do you have questions about what services are available to your grandchild with albinism or what service providers actually do when they meet with your grandchild? What is a TVI, and what is an Orientation and Mobility Specialist? Susan Dalton is a Certified Vision Rehabilitation Therapist, a grandparent and the parent of three adult children, of which two have albinism; and she will be answering these questions and more. Sue will explain the services that your grandchild receives and what you can expect from these services.
Growing Up with Albinism with Guest Speaker, Mike McGowan, Executive Director of NOAH
Join other grandparents of children with albinism for this opportunity to learn and ask questions about what it’s like to grow up with albinism. Mike McGowan will share his personal life experiences as a legally blind person with albinism. These experiences include his 30 year career as an information technology professional working in the local court, as well as his second career as NOAH’s first Executive Director in January 2010. Prior to being named Executive Director, Mike served as a NOAH board member from 1995 to 2009, including being president from 2001 to 2009.
Grandparents of Children with Albinism with Guest Speakers, Don Martin and Laura Sawyer
Don Martin and Laura Sawyer (featured in the photos above) shared their knowledge and experiences as grandparents of children with albinism. Laura and Don have been involved with NOAH for many years, and they have written recent articles in NOAH’s “Albinism InSight” magazine.