Welcome to the NOAH Parents' Page!

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 sadamo@albinism.org for more information or to sign-up!


New! Sneak Peek at Upcoming Sessions - Check back for more details soon!

Latest in Albinism Research with Murray H. Brilliant, Ph.D., Director of Center for Human Genetics, Marshfield Clinic
Dr. Brilliant will present a teleconference on the latest in albinism research, followed by questions and answers.


Previous Webinars Now on NOAH's YouTube channel!


Bioptic Driving

View the Bioptic Driving Webinar

This webinar will provide an overview of bioptic driving; then highlight steps to becoming a bioptic driver.

Special emphasis will be placed on:

  • The concept and basic use of a bioptic lens sytem during the driving task; 
  • Securing accurate information re the legalityof bioptic driving in your licensing jurisdiction; 
  • Third party sponsorship for bioptic driver education services; 
  • Sequence of basic services;
  • Pre-driver readiness;
  • Basic components of bioptic driver education training;
  • States that offer bioptic driver training;
  • Driver testing and licensure;
  • The appeals process;
  • When to stop driving
Presenter: Chuck Huss, COMS
Mr. Huss received his Master of Arts degree in Orientation and Mobility from Western Michigan University in 1976. He has worked as an Academy-certified Orientation and Mobility Specialist in the States of Ohio and West Virginia for the past 36 years, serving clients or students k through geriatrics. Mr. Huss is nationally known for his work and experience in the area of formalized bioptic driver training and assessment. Currently he serves as the Coordinator and one of five (5) driver rehabilitation specialists working within the full-time West Virginia Bioptic Driving Program, Nitro, WV. His employer for the past thirty (30) years has been the West Virginia Division of Rehabilitation Services.



The Great Adventure: Discovering the Joys and Challenges of Parenting a Child with Albinism
DALTON

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, FAAO
Rick 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

Kim


Parents and guardians are essential to the process of creating an IEP that best represents the needs of their children with albinism. Knowing what students need and how to best meet those needs requires essential knowledge of the IEP process to facilitate decision making and active contributions with the IEP team. 
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.



"Stares, Smirks and Shout-outs" 

This session will address how to deal with negative experiences in public and how to maintain self-esteem and dignity in difficult situations - from the blatantly rude person who yells "Hey, albino!" to the hilariously annoying inquisitor who asks, "Where did you get such white hair?"  We will explore the emotions, behaviors and thought processes that these experiences bring about in us and discuss tips to minimize their impact.  Attendees will receive suggestions they can use in their daily lives to cope with the occasional challenges of living with albinism.  

Kelsey Thompson is a person with albinism who has been a NOAH member since its foundation and has attended 10 NOAH conferences. Kelsey currently serves as the secretary of the NOAH Board of Directors and is the immediate past chair.  Kelsey also serves as the Editorial Committee chairwoman and Scholarship Committee co-chair; she has served on NOAH’s Board of Directors since 2005 and has also been involved with the Board of Scientific Advisors. As the editor of Albinism InSight/NOAH News from 2000 to 2008, Kelsey helped to establish a regular publication schedule and organized the new design that transformed the publication from a black-and-white newsletter to a full-color magazine.  Kelsey holds a Bachelor of Science in psychology from DePaul University and a Master of Science in rehabilitation counseling from the Illinois Institute of Technology. She is a Certified Rehabilitation Counselor (CRC), Certified Case Manager (CCM) and Licensed Clinical Professional Counselor (LCPC). Since 2006, Kelsey has been employed at the Chicago Lighthouse, where she works as the Intake Rehabilitation Counselor in the Employment Services division.

View the Stares, Smirks and Shout-outs webinar.


"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.

View the How we see webinar.


Here Comes the Sun – Learn How to Stay Protected!
NOAH is happy to announce that the Sun Protection webinar is available on YouTube. Watch as dermatologist Dr. Aisha Sethi explains: 
  • the harmful effects of the sun’s rays on people with albinism 
  • practical sun protection tips
  • the new labeling regulations for sunscreen and sunblock 
View the Sun Protection webinar


The ABCs of HPS

Everyone in the albinism community should know about HPS (Hermansky-Pudlak Syndrome). Knowledge of HPS eliminates the risk of not knowing about something that may affect your well-being and makes preventative health management possible. HPS Network founder and president Donna Appell, RN provides an overview of this rare form of albinism.

View the HPS Webinar 
 
QUESTIONS? 
If, after viewing the webinar, you have questions about HPS, please email info@albinism.org and we will assist you in getting answers.




Questions? Email parents@albinism.org