NOAH is proud to announce a new way to bring our discussion groups and information sessions into your living room! Parent Teleconferences and Webinars provide opportunities for parents to connect and support each other while addressing a variety of topics. We will host one teleconference or webinar per month and the calls will last for about one hour. To learn how to join these dynamic and informative workshops, click the registration link below. At the set time, just login or call the number provided to participate in the workshop while connecting with other parents.
About Parent Connections
NOAH, in partnership with Lighthouse Guild International, has developed a 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. Get the support you need to be a healthy, informed parent, and build connections in the albinism community – all in the comfort of your own home.
The teleconferences consist of a limited number of parents to provide a safe and comfortable environment for you to voice concerns, ask questions, and share your experiences. Two groups meet for one hour twice a month; one in the evenings and the other at midday. Both are facilitated by a licensed professional and feature presentations from professionals on raising children with albinism.
Limited space available to join us this week!
Daytime Chat: Wednesday, November 13th at 12:00pm CT
Evening Chat: Thursday, November 14th at 8:00pm CT
Email firstname.lastname@example.org for more information or to sign-up!
New! Sneak Peek at Upcoming Sessions - Check back for more details soon!
No matter how much we read or research, one can never come up with a sure-fire method to raise the perfect child – whatever that may be. Raising a child with albinism can present new challenges that can be an exciting adventure for the entire family. Hear about strategies that may help you as you grow alongside your son or daughter as a parent of a child with this exceptionality.
Presenter:Susan Dalton, M.S.Ed., CVRT
Susan Dalton is a long-time member of NOAH who has served in a variety of positions in the organization nationally and in Illinois. She is the parent of three adult children, two who have albinism. As a Teacher of Visually Impaired, Certified Vision Rehabilitation Therapist and Faculty Member at Northern Illinois University, she has experienced an array of roles in program development, education and support of children, parents and professionals in the field of blindness and visual impairment.
What to expect in a low vision examination, led by Dr. Rick Thompson
This session addresses the components of an eye examination for those with albinism including case history, measurement of visual acuity, eye health assessment, determination of refractive error, and evaluation of strabismus and nystagmus. Special consideration of the needs of infant and pre-schooler eye examinations are also discussed.
Presenter: Rick Thompson, OD, FAAORick Thompson graduated 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. In 1985 his interest in children's vision led him to study developmental and behavioral optometry. In 1993 he and his wife, Trish, became proud parents of their fourth child, Lee-Anne, who has OCA (oculo-cutaneous albinism). He 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 2008 publication "Raising a Child with Albinism". Dr. Thompson currently serves as a Rapid Responder for NOAH, and as Chair of NOAH's BSA (Board of Scientific Advisors).
Effective IEP Advocacy for Students with Albinism
This seminar will highlight basic advocacy skills, referral and eligibility procedures for an IEP, assessments specifically for students with visual impairments and will include an overview of considerations for accommodations and placement/service delivery options for students with albinism.
Presenter: Kimberly Avila M.A., COMS
Ms. Avila is a mother, experienced teacher of students with visual impairments and ACVREP Certified Orientation and Mobility Specialist. She is contributing author to the book Raising a Child with Albinism: A Guide to the Early Years and has published several materials and articles in the areas of blindness, visual impairment, multiple disabilities and advocacy. Additionally, Ms. Avila has created a number of original curricula and has taught at the graduate level as an adjunct university faculty member preparing service providers for the blind and visually impaired. She has extensive experience working with persons who have visual impairments, from extremely premature infants to senior citizens and every age in between.
"How we see"
led by Matt Bailey
How We See: A virtual look through the eyes of people with Albinism
Have you ever wondered what your child's vision looks like? Have you ever felt confused by the numbers and terms medical professionals use to describe low vision? Do you find yourself worrying about the things your child can’t see and marveling at what your child can see, all in the same day?
"How We See" explains the essential features of vision in people with albinism. The presentation will include approximate simulations of what it looks like to see with albinism. You'll learn why albinism makes some daily tasks hard, but doesn't impact others. You'll also get concrete explanations of the numbers and terminology of low vision, and learn why low vision isn't as bad as the medical language often make it sound.
Our presenter is Matt Bailey. An adult with albinism, Matt is a marketing analyst and consultant specializing in media research. He served on NOAH's Board of Directors from 2000 to 2006 and helped organize NOAH's 2004 National Conference in Atlanta. He and his wife, Meliké (who also has albinism) live in Chapel Hill, NC along with their three-year-old daughter.
NOAH is happy to announce that the Sun Protection webinar is available on YouTube. Watch as dermatologist Dr. Aisha Sethi explains:
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