Grandparent Connections

Welcome!

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. .

Upcoming Sessions


Please check often for teleconference updates.

 


Past Sessions

Contact the Grandparent Connections Coordinator for access to the recordings when available.


 

Living with Albinism – A Teen’s Perspective

Teen Panel

Thursday, November 8, 2018 at 8:00pm CT

Join us as we have a panel of teens with albinism that are excited to share their personal experiences on what is it like 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?

Kathi and Jill

Jill Gorman and Kathi Garza

Monday, August 6th at 8:00pm CT

Two of the creators of the NOAH SchoolKit will join us to answer questions and provide 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.

 

Jill Gorman
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 M.Ed. CTVI
Kathi 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.


Adapting to the Diagnosis of Albinism – Sheila Adamo

Sheila Adamo

Wednesday, May 2nd, 12:00pm CT (note time change)

This presentation will outline the common stages parents experience while adapting to raising a child with special needs, and provide insight and suggestions to how you can assist your child and grandchild with this process. We will also examine the process of adapting that grandparents experience and discuss strategies to assist the entire family.

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. Sheila and her husband are raising 4 children, one of which has a visual impairment. Ms. Adamo has worked with many different populations in the mental health field. Her passion is working with parents to help them find the tools they need to be successful.


NOAH’s 2018 Conference – What is it all About and How do Grandparents Fit in?

NOAH Conference

Tuesday, February 27th at 8:00pm CT

Mike McGowan and Jill Gorman

Join us to hear from the people planning the conference on what to expect at the conference and why you should attend. We will also provide suggestions for first time attendees. Other grandparents will share their personal experiences and tips regarding attending a NOAH conference.

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.


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.

Joni and Mike will share their experiences growing up with albinism and will answer your questions regarding albinism. During this call, Joni and Mike will also share how people with albinism do things that one might think is impossible for people with low vision.

Joni Vella is a person with albinism from Wisconsin. Joni is active in NOAH Bowl-a-thon team leader recruitment and mentoring. She has hosted six successful bowl-a-thons in the Milwaukee area, and has helped plan several adult weekends and other events. Joni holds a Bachelor’s degree in Biology from the University of Wisconsin- Whitewater. She and her late husband, Chuck, were married for 30 years. They have three grown daughters and three grandchildren.

Mike McGowan is a person with albinism. Following a 30 year career in local government service as an information technology professional working in court management, Mike started his second career as NOAH’s first executive director in January 2010. Mike served as a NOAH board member from 1995 to 2009 including being president from 2001–2009. .Mike has a Master’s of Science in management of public service from DePaul University in Chicago. A lifelong resident of Chicago, Mike has been married for nearly 30 years. He and wife, Sheri, have a grown son, Bobby.


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.