NOAH, in partnership with Lighthouse Guild International, 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.

Join the Group!

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 us, please fill out the brief intake form, and the Parent Connections Coordinator will contact you soon!

Do You Know About Grandparent Connections?

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

Upcoming Sessions

Teleconferences start at 6:00 pm PT, 7:00 pm MT, 8:00 pm CT, 9:00 pm ET


November 27th, 8:00pm central time

Calling all Fathers of a child with albinism to join this call!

This call is for dads of all ages to join and to share your unique concerns and experiences as  a father of a child with albinism.  If you were at the conference this summer, the dads’ group was interactive, informative and fun.  Join this call so we can bring that meeting to everyone in the albinism community.

Parent Connections - Dads


December 4th, 8:00 pm central time

Teen Panel – Living as a Teen with Albinism

Join us as a panel of teens with albinism share their personal experiences with albinism and offer a glimpse into the life of a teenager with albinism.

Teen Panel


Past Sessions


November 7th, 8:00pm central time

Sport & Albinism with Donté Mickens

Learn about sports and recreation for the child with low vision so that your child can participate in local, regional and national sports & recreational events. Topics include adaptive sports, adaptive equipment, adaptive physical education, overcoming barriers, as well as creating the least restrictive environment for your child in sports & recreation. Learn how the benefits of being active transfer into our daily activities.

Donté Mickens

Donté Mickens is a Paralympic medalist and member of the Men’s U.S. National Goalball team (2003-2016), competing in the Paralympics Games in Athens, Greece (2004) and Beijing, China (2008). He is from South Florida where he works as a Financial Consultant for the National Council on Compensation Insurance (NCCI). He’s a graduate of FSU where he received B.S. degrees in Finance and Risk Management and a Master’s degree in Risk Management and Insurance. Donté currently serves as the board chair for NOAH.


 

October 22nd – 8:00pm central time

Dual Media and Albinism – Dr. Kelly Lusk

Please join us for this call which will focus on determining the best learning tools for your child with albinism and a discussion on the topic of braille and albinism.  Dr. Lusk will share her expertise and knowledge on this topic and will be available for questions.

Dr. Kelly Lusk

Dr. Kelly Lusk, PH.D. received her bachelor’s, master’s, and Ph.D. degrees from Vanderbilt University. Her bachelor’s is in French and Secondary Education, and her master’s and Ph.D. are in Special Education, with an emphasis in teaching children with visual impairments. Dr. Lusk is adjunct faculty at The Ohio State University, Marshall University, and California State University – Los Angeles, where she teaches courses in literary braille, Nemeth braille, abacus, eye anatomy, and low vision. Dr. Lusk serves on multiple professional committees and advisory boards, and has successfully testified as an expert witness in helping to provide appropriate special education services for a child with a visual impairment. Dr. Lusk has had her research published in various journals, and has presented extensively on topics including pediatric low vision, optical devices, and dual media (print and braille). She has previously worked as a French teacher, early interventionist, and an itinerant teacher of students with visual impairments (both in a public school system and with 2 statewide programs providing pediatric clinical low vision services). Dr. Lusk lives with her husband, Todd, and two daughters, Claire and Anne-Marie, in Florence, Kentucky.


October 9th, 8:00 pm central time

Orientation and Mobility and Establishing Independence in the Teen Years – Marjie Wood

Join this call and learn strategies and tips for transitioning your child with albinism into independence and giving them the space to succeed.  Marjie is a wonderful speaker full of O&M knowledge to help guide parents during the complicated teen years. Please send in specific questions ahead of time so she can structure her presentation to meet our specific needs.  Please submit questions by October 3rd.

Marjie Wood

Marjie Wood is a certified Orientation and Mobility specialist (COMS) and Teacher for the Visually Impaired (TVI). She has over 40 years of teaching experience as a TVI for infants and toddlers and COMS for children from birth to 22 in the Austin Independent School District and at the Texas School for the Blind and Visually Impaired. For the past 9 years, Marjie has been giving workshops and presentations on various topics related to O&M for parents and colleagues from around the U.S. and Canada. She has been a subject matter expert for AFB Family Connect and has authored the chapter on Orientation and Mobility in NOAH’s parent book, Raising a Child with Albinism: A Guide to the School Years. She is currently working with other colleagues on Texas 2 Steps: An Evaluation and Curriculum from Birth to 5 which is projected to be published by fall of 2018. Marjie believes that parents are their child’s first O&M teacher and is passionate about partnering with them and helping colleagues identify early foundational skills that will help set the stage for becoming successful and productive adults.


 

September 27th, 8:00 pm central time

Connecting Families of Young Children – Sheila Adamo

Adjusting to life as a parent of a child with albinism is a unique process that, at times, can feel isolating and can leave a parent full of questions. Join this call and become part of a community that truly understands. This call will allow parents to share their questions and concerns as well as provide an opportunity to learn and support each other. We will not record this call in order to provide a safe place to share feelings.

Sheila Adamo

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.


August 29th, 8:00pm central time

Staying Cool as your Kids Return to School – Sheila Adamo and Jill Gorman

At this time of year parents can fell a range of emotions from pure excitement to complete fear and dread.  Starting a new class, new friends and new teachers can fill you and your child with anxiety and excitement. Come share your ideas on making the start of school a smooth transition and listen to other people share what works for them.  We will discuss strategies for you and your children to transition into the new school year smoothly.

Sheila Adamo
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.
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 and 2018 national conferences. She is an active member of her community as the chair of a support group for families of children with special needs.

 

 


September 12th, 8:00pm central time

Living with Albinism – Ed Dalton

Ed Dalton will have a candid discussion with us about growing up with albinism and share with us his story about creating the app for visually impaired music lovers.     www.airturn.com

Ed Dalton

Ed Dalton is 36 and lives with his wife, Kristen, in Philadelphia. Ed studied physics & aerospace engineering as an undergraduate and recently earned a masters degree in bioengineering from Temple University. He currently works in a lab for the Department of Defense. In his free time, Ed is a runner, a musician, an app developer, and a halfway decent cook. Ed and Kristen have been renovating their century-old rowhouse for the last two years. Throughout the construction process Ed has found he has a passion for woodworking. With family outside of Chicago and Boston, Ed & Kristen have wracked up a wealth of frequent flyer miles.


The NOAH Conference Experience – Mike McGowan, NOAH Executive Director

Join us for a call with Mike McGowan, NOAH’s Executive Director, and other Parent Connection members 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.

Mike McGowanMike 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.


Reflecting on “Moments” – Judi Duffey

Wednesday, June 27th

Join us for our guest speaker Judi Duffey who will share her experiences and wisdom on parenting and raising a daughter with albinism, who is now a practicing medical Doctor. Judi was featured in Albinism InSight with some of her thoughts. Join us for a lively discussion on parenting and children with albinism.

Judi DuffeyJudi Duffey is mom to Megan, a 27 year old daughter with albinism and Hanna, a 24 year old daughter without Albinism. Judi and her husband moved to Phoenix 18 years ago so their oldest daughter would have more resources available to her. Today both daughters live in Indianapolis and have started their careers. The family has been with NOAH for 20 years and has greatly benefited from their encouragement and services.


Understanding Stigma and Albinism – Kenneth Southall, PhD

Monday, June 11th

Kenneth SouthallKenneth Southall, PhD is a researcher at Institut Universitaire de Gériatrie de Montréal and Adjunct Professor in the School of Social Work at McGill University, in Montreal, Quebec, Canada. His research addresses the stigmatization associated with health conditions, and specifically how stereotyping, prejudices and discrimination influence adoption and use of assistive technologies, the decision to access health care, and disclosure of stigmatizing traits.


International Albinism Awareness Day – Shining our Light to the World is June 13th – Natalie Devora and Regan Gentile

Thursday, May 24th

Join us as Natalie and Regan share the history of this important day and provide how we all can get involved to increase albinism awareness.

Natalie DevoraNatalie Devora is a writer and activist. Living as a black woman with albinism affords her a unique lens through which she navigates the world. Her memoir Black Girl, White Skin: A Life in Stories will be available June 2018. By day, she works as a parent educator and hands-on childcare provider with a specialty in newborn care through toddler care. She is a parent, via adoption, to a now 22 year old daughter. It is Natalie’s second year acting as the national coordinator for IAAD.

 

Regan GentileRegan Gentile is a mother of two daughters and has been involved in NOAH since 2014 when her eldest daughter, Elise, was diagnosed at six months old. Since Elise’s diagnosis, Regan has been involved with NOAH on the marketing communications team and spearheading events and activities within the Northern Illinois chapter of NOAH.  She is also a parent liaison and enjoys connecting families with NOAH. She lives in Elmhurst, IL.

 


Connecting Families of Young Children – Sheila Adamo, LCSW, CADC

April 19th – 8:00 pm CT

Adjusting to life as a parent of a child with albinism is a unique process that, at times, can feel isolating and can leave a parent full of questions. Join this call and become part of a community that truly understands. This call will allow parents to share their questions and concerns as well as provide an opportunity to learn and support each other. We will not record this call in order to provide a safe place to share feelings.

 


Fathers of Children with Albinism

April 3rd – 8:00 pm CT

Calling all fathers of children with albinism—Join our discussion about your unique journey in raising a child with albinism. Please join this lively group to learn, laugh and share.


Setting Appropriate Boundaries for Your Child – Sheila Adamo, LCSW, CADC

February 7th – 8:00 pm CT

Setting boundaries for children is a vital role of parenting which provides a safe, secure and predictable environment for a child to explore and thrive in. When a child has a special need this process can be more difficult and confusing for the parent. Doubt, fear, insecurity and misinformation can lead to inconsistent and unclear boundaries that will impact how children will respond to the world. Please join us for this workshop where we will take time to explore what healthy boundaries are and how to find the right boundaries for you and your family.

Sheila Adamo, LCSW, CADC is a Licensed Clinical Social Worker with an additional certification in Alcohol and Drug Abuse Counseling. She facilitates Mothers’ Workshops, discussion groups and teleconferences for parents of children with special needs. 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.


Steps Towards Visual Independence – Anne Corn, Ed.D.

February 22nd – 8:00 pm CT

Dr. Corn will outline and discuss the article published in Albinism InSIght Magazine. She will also leave to time to answer individual questions, but if you have questions in advance, please submit by replying to this email.

Anne Corn, Ed.D. is professor emerita from Vanderbilt Universities where she held appointments in both Special Education and in Ophthalmology. She has come out of retirement to become a volunteer research professor at the University of Cincinnati, working with the Cincinnati Children’s Low Vision Rehabilitation Program and a member of the Board of Trustees of the Texas School for the Blind and Visually Impaired. Anne also serves on the NOAH Scientific Advisory Board. Anne has had more than 40 years as a teacher of children with visual impairments, a teacher educator, writer, researcher, and advocate for children who have low vision. In addition, she has had 60+ years experience as an individual with congenital low vision.


A Guide to the NOAH Conference – Mike McGowan and Jill Gorman

March 1st – 8:00 pm CT

Join us as the conference planners share what to expect at NOAH’s upcoming national conference. Learn tips for making it the best conference experience ever.

Mike McGowan started his second career as NOAH’s first executive director in January 2010, following a 30 year career in local government service as an information technology professional working in court management. Mike served as a NOAH board member from 1995 to 2009 including being president from 2001 – 2009.

Mike has a Masters of Science degree in management of public service from DePaul University in Chicago. Mike has albinism. A lifelong resident of the City of Chicago, Mike has been married for nearly 30 years. He and 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, 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.


Raising an African American Child with Albinism – Brandi Green

March 12th – 8:00 pm CT

This call will provide a space for parents of African American children with albinism to share their unique struggles and concerns and get some valuable advice.