Category: Resources

Resources

Albinism Information

  • NOAH (The National Organization for Albinism and Hypopigmentation)- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences.
  • International Albinism Center
  • Albinism International– An online support community for people with albinism, parents of children with albinism, and people related persons with albinism.
  • Albinism Fellowship UK– An organization that aims to provide information, advice, and support for people with albinism and their families.
  • SARA Foundation (Supporting Albinism Research and Awareness)- A site created to help parents who have children who are diagnosed with albinism.
  • Positive Exposure– Positive Exposure is a not-for-profit, 501(c)(3) organization whose innovative programs challenge the stigma associated with difference and celebrate the richness of genetic variation with positive images and powerful life stories.
  • The Hermansky-Pudlak Syndrome Network Inc.– The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.

Vision Related

  • American Nystagmus Network– A nonprofit organization to serve the needs and interests of individuals with nystagmus and and/or their families.
  • Vision for Tomorrow Foundation
  • Hadley School for the Blind– Offers free courses to parents and grandparents of children who are blind or visually impaired on a variety of vision related subjects.
  • The Low Vision Gateway– A comprehensive list of low vision resources from around the world.
  • Vision of Children– Information about current medical research, outreach, and education.
  • NAPVI (National Association for Parents of the Visually Impaired)- NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.

Websites/Blogs of parents of children with albinism

Websites/Blogs of adults with albinism

Commercial Websites

  • Solar Eclipse– Sun protective clothing
  • UV Sungear– Large selection of sun protective swimwear, clothing, sunglasses and hats for the whole family. Also have sunshades for car seats and strollers.
  • Baby Ride– Not the most organized site, but they have a lot of really unique products in the accessories section, including a great sunshade by Jolly Jumper for full size car seat.
  • Sun Togs– Sun protective clothing for all ages and cool kids sunglasses.
  • North Solar Screen– Various types of window tinting and window shades.
  • Llumar Window Film and Window Tint– Professional glass film/tinting for home or auto.
  • Industrial Shadeports– Custom build shade structures.
  • Protect-a-Bub– Sun protective clothing and accessories.
  • One Step Ahead– They have a variety of products for babies and children, including many for sun protection. Shop through iGive.

Other Resources

  • SENSwitcher– Free computer application/game to promote vision development. You can run the program online or you can download it onto your computer.
  • Seedlings– A non-profit organization providing a wonderful selection of high quality, low cost braille books for children. They have many popular titles and the books include both print text and the braille.
  • Library Reproduction Service– Large print books for children and adults and Large Print reproductions of educational materials for special needs students.
  • Perky Duck – A six-key braille emulator computer program for creating braille files. Uses a regular computer keyboard. Good for parents to practice on when learning braille.

Articles

New Parenting Book Available

The new book, “Raising a Child with Albinism: A Guide to the Early Years” is now available for purchase.  It is published by the National Organization for Albinism and Hypopigmentation (NOAH) and is the first of its kind.  This book will be an invaluable resource for new parents of a child with albinism.  It truly is a great book.  I’ve already bought 6 copies. 😛 I am also one of the 20 contributing writers and one of the 8 contributing photographers.  🙂   You’ll find pics of my Lyra on pages 41 and 88.

Here is the book description from the NOAH website:

Raising a Child with Albinism:
A Guide to the Early Years is a 200-page volume containing contributions from close to 20 different writers. It provides a singularly authoritative source for new parents of children with albinism. Edited by NOAH member Susan DuBois, mother of two children with albinism, this informative and inspiring book is illustrated with color photos contributed by Positive Exposure�s Rick Guidotti and eight others.
Topics include:
-What is albinism?
-How will albinism impact my child�s development?
-How do I stimulate my child�s vision?
-The social impact of albinism.
-Sun safety
-Early intervention and IEP programs
-And MUCH more!
Here is a link to purchase the book from the NOAH website: NOAH Store

Resources

Albinism Information

NOAH -The National Organization for Albinism and Hypopigmentation- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences.

Albinism International -An online support community for people with albinism, parents of children with albinism, and people related persons with albinism.

Albinism Fellowship UK –An organization that aims to provide information, advice, and support for people with albinism and their families.

SARA Foundation -Supporting Albinism Research and Awareness- A site created to help parents who have children who are diagnosed with albinism.

Positive Exposure – Positive Exposure is a not-for-profit, 501(c)(3) organization whose innovative programs challenge the stigma associated with difference and celebrate the richness of genetic variation with positive images and powerful life stories.

The Hermansky-Pudlak Syndrome Network Inc. –The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.

Vision Related

American Nystagmus Network –A nonprofit organization to serve the needs and interests of individuals with nystagmus and and/or their families.

Hadley School for the Blind –Offers free courses to parents and grandparents of children who are blind or visually impaired on a variety of vision related subjects.

The Low Vision Gateway -A comprehensive list of low vision resources from around the world.

Vision of Children -Information about current medical research, outreach, and education.

NAPVI -National Association for Parents of the Visually Impaired- NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.

Websites/Blogs of parents of children with albinism

Alana’s Albinism Site

Amber’s page

Emerson Porter

William’s Site

Joseph Andrew

Skate Angel

Life in Noodletown

Ramblings of Casey

Websites/Blogs of adults with albinism

Heather Kirkwood’s Blog

Bianca Knowlton’s Site

Nicole’s Site

Annette’s Blog

Commercial Websites

Solar Eclipse -Sun protective clothing

UV Sungear –Large selection of sun protective swimwear, clothing, sunglasses and hats for the whole family. Also have sunshades for car seats and strollers.

Baby Ride -Not the most organized site, but they have a lot of really unique products in the accessories section, including a great sunshade by Jolly Jumper for full size car seat.

Sun Togs -Sun protective clothing for all ages and cool kids sunglasses.

North Solar Screen -Various types of window tinting and window shades.

Llumar Window Film and Window Tint – Professional glass film/tinting for home or auto.

Industrial Shadeports – Custom build shade structures

Protect-a-Bub – Sun protective clothing and accessories.

One Step Ahead -They have a variety of products for babies and children, including many for sun protection. Shop through iGive.

Other Resources

SENSwitcher -Free computer application/game to promote vision development. You can run the program online or you can download it onto your computer.

Seedlings -A non-profit organization providing a wonderful selection of high quality, low cost braille books for children. They have many popular titles and the books include both print text and the braille.

Library Reproduction Service – Large print books for children and adults and Large Print reproductions of educational materials for special needs students.

Perky Duck – A six-key braille emulator computer program for creating braille files. Uses a regular computer keyboard. Good for parents to practice on when learning braille.

Articles

Socialization and the Child with Low Vision

The Role and Function of the Teacher of Students with Visual Impairments

Coming Soon… more blurbs, more personal websites/blogs, commercial websites.


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Lyra’s Updated “Business” Card

We have recently updated the “business” cards we had made a while back. We changed the pictures, replacing them with more recent ones. I also changed the wording on the back slightly. In case you haven’t seen the previous post about how/why we made these cards, you can view that post here: Here’s My Card

We designed and ordered them through Vista Print. They’re always having special deals and you can also get other types of personalized products; magnets, address labels, calendars, pens, etc. Below is a picture of the front and back of Lyra’s card.

Click on thumbnail to view full size.
Lyra’s updated “business” card

Here’s My Card

Here is an idea. Maybe I’m a little obsessive, but oh well. For anyone who has seen NOAH’s albinism info. “business card, you’ll notice I modeled ours after it. I first got the idea to make something like this after Lyra’s TVI told me about a parent who got sick of answering the same questions over and over again and decided to make bookmarks with information about albinism to give to people. Then I saw NOAH’s cards and knew I had to make our own. I am a strong believer in educating anyone who has questions or anyone who only knows the myths regarding albinism. These cards are really great to carry in my purse just in case. It saves us the stress involved in answering questions or responding to ignorant comments and quickly shuts-up the annoying people.card-front1.JPG card-back1.JPG


Creative Commons License

This
work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

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