Parent of a Child with Albinism

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

• Alana’s Albinism Site
• Amber’s page
• Emerson Porter
• William’s Site
• Joseph Andrew
• Skate Angel
• Life in Noodletown
• Ramblings of Casey
• Inconsistent Ramblings

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
  
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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:

It looks like more and more mommies are getting the hang of this blogging business. Here is the blog of a mom, Cassandra, who has become a true friend of mine. She has 3 beautiful daughters, 2 of which have albinism, and she is due to have her 4th baby in October.

Ramblings of Casey

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.

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.

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