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. .
Check back later for new sessions.
Contact the Grandparent Connections Coordinator for access to the recordings when available.
Growing Up with Albinism - Joni Vella and Mike McGowan
Is there something you have wondered how your grandchild will be able to accomplish but have been afraid to ask? For instance, how will they mow the lawn or vacuum and see the dirt? If so, you won’t want to miss this practical and honest call.
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. Gianna Guskey has worked in District 15 in Palatine, Illinois for the last 12 years, and she has a 14-year-old son with albinism.
Albinism and the Eye - Dr. Rick Thompson
During this call, Dr. Rick Thompson will give 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.
Rick Thompson, O.D., FAAO, earned his degree in optometry from the University of Waterloo, Ontario, Canada in 1979. In addition, he earned his fellowship at the American Academy of Optometry in 1982. Dr. Thompson and his wife, Trish, are proud parents of Lee-Anne, who has oculocutaneous albinism. Dr. Thompson is in private practice in Brampton, Ontario, Canada, where he offers general optometric care as well as vision therapy and low vision services to both children and adults. Dr. Thompson contributed to the vision section in NOAH’s publications, "Raising a Child with Albinism: A Guide to the School Years." Dr. Thompson serves as a Rapid Responder for NOAH and as Chair of NOAH’s Board of Scientific Advisors (BSA).
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.
Sheila Adamo, LCSW, CADC, is a Licensed Clinical Social Worker with an additional certification in Alcohol and Drug Abuse Counseling. She facilitates the Mothers’ Workshop, discussion groups and teleconferences for parents of children of albinism within NOAH. She also currently leads the New Parent Program for NOAH and the Parent Connections Program. Sheila served on the NOAH board of directors for eight years and as board chair for two years. Ms. Adamo has worked in with many different populations in the mental health field, but her passion is providing parents the tools they need to be successful parents, while being a strong role model for their children by leading healthy and happy lives.
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. If you have any specific questions for Sue, email them to the Grandparent Connections Coordinator; and she will forward them to Sue before the call.
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.