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NI NOAH Technology Assistance Program

Technology Assistance Program
With applicants ranging from preschool to high school, the Technology Assistance Program was a great success! Congratulations to Christopher, Leo, Kenneth and Zachary. They all received the iPads they requested and were grateful for NI NOAH in helping them leverage their learning. Parents Ruben and Leslie Alamo accepted the iPad for Leo at our summer pool party in August!  

Pool Party

Pool Party = Fun
The NI NOAH community came together to celebrate the end of summer with a fun-filled pool party hosted by the Schroeders! Over 50 people enjoyed great food, conversation and laughter! NOAH's Executive Director, Mike McGowan, presented one of the technology assistance recipients, Leo Alamo, with his iPad. Leslie and Ruben Alamo proudly accepted on Leo's behalf. 

Thank you, again, to the Schroeders for another fantastic event!

Northern Illinois Play Date

October 22nd: Join Us For Our Fall Play Date
If you know someone with albinism, please spread the word about our 3rd Annual NOAH Fall Play Date! 

Date: Sunday, October 22nd
Time: 3:30 - 5:30 pm
Where
11 S. White St.
Frankfort, IL 60423 
Cost: $5.00 per family includes admission and a light snack 

RSVP by October 13th -- Space is Limited 
Questions & RSVP: Email kiakidd419@gmail.com

Hope to see you there, and please spread the word!

Back to School

Back-to-School Tips
Heading back to school can be overwhelming for parents and children. Thankfully, NOAH has a resource that can provide a lot of answers to your questions. 

Did you know the SchoolKit provides information and resources to guide parents in supporting general education teachers when a student with albinism will be in their classroom during the upcoming school year? The kit is divided into five sections with instructions and suggestions on how to use the information within it. Sections include:
  • Informational sheets for teachers 
  • Documents to help guide conversations between parents and educators 
  • Templates for student involvement in conversations and advocacy 
To learn more, visit www.albinism.org/schoolkit

NOAH National Conference

Save the Date for #NOAHCon2018
Mark your calendar for the 2018 NOAH National Conference! #NOAHCon2018 will take place in Kansas City from July 12-15th! It's a great way to connect with other families while gaining new information on albinism from various experts in the field. Want more information? Visit www.albinism.org/events for more information and stay tuned for updates! 

Leden Family

Family Spotlight: The Leden Family
As the parent of a child with albinism, I often hear people say, "Ellie seems to see just fine." And she does in some situations. We made it through kindergarten fairly easily. When a child first learns to read and write, the letters are large. The signs on the walls, the tags on classroom materials, the text in the books, the lines on the paper, etc. are all large. In first grade, the letters started getting smaller, and we started to see Ellie slip in her academics. It was a struggle to do homework, she hated to read, and most nights, we would end up fighting over it. Halfway through the school year, we were informed that she was not reading at her grade level. As a result, she started working with the school's reading specialist. By the end of first grade, she was not reading at a first grade level. We determined that vision was part of the problem. After all, if she wasn't able to easily see the text, how could she read it?

Around this time, there was a little boy with albinism in Tennessee who made national news. His community bought him a pair of eSight glasses. The manufacturers of the glasses alleged that they could bring 20/20 vision to individuals with albinism. Ellie's grandma saw the news story, and we started looking into the eSight glasses. The idea of closing the gap for Ellie in the classroom was exciting and stressful all at once. It was exciting because what if this device would really allow her to see detail she has been missing out on? It had the makings of an amazing story! It was stressful, because upon making contact with the eSight Corporation, we learned that the glasses cost just shy of $10,000. As a parent, I wondered how I could put a price on vision. However, $10,000 was a lot of money for a seven-year-old to wear. Not to mention, the policy of the company was that you could not try them before you buy them. We were looking at having to pay $10,000 for a pair of glasses that may or may not work.

Somehow or another, we caught a break. At the end of June, we traveled to Chicago to do a demonstration with the eSight glasses. We were able to try the glasses on and make a decision as to whether we wanted to move forward with the purchase. Naturally, when Ellie first put the glasses on, I was hoping for an "aha" moment. I'm not sure that was the initial response. These glasses are technology and did have a learning curve. We spent about an hour and a half using the glasses that day. Ellie was able to read the Snellen chart at a 20/20 acuity using the glasses! By the end of the demonstration, she was walking around, looking at all sorts of new things and giggling, a lot. I knew when we walked out of the demonstration that I had to try and purchase these glasses.

With the urging of the eSight Corporation, we decided to try crowd funding. The week after the demonstration, I pooled my resources and started working on the campaign. Ellie's Aunt Melony wrote the appeal on the eSight fundraising page. Her Aunt Bridget worked on press releases for our local media and the social media post. We also had a video created to show the eSight glasses and some actual footage of the demonstration where Ellie was giggling and trying out the glasses. When everything was set in place, I made a post on my personal Facebook page. I made the initial post around 9:30 p.m. The following day, Ellie and I spoke with a reporter from the local newspaper, and shortly thereafter the story went online. The following morning, Ellie's story ran on the front page of the paper, and by 10:30 a.m., we had raised the money required to purchase the glasses! In all, it took 36 hours to raise the money. It was incredibly humbling. Many of the donors were friends and family. Many of the donors were anonymous community members.

We received the eSight glasses four weeks before the start of the school year. Ellie had been working with a tutor throughout the summer on reading. She was able to use the glasses with the tutor and practice before the school year started. The tutor said that within two sessions she could see her fluency increase! Currently, she is using them in the classroom. She is able to zoom in on materials, change the contrast, change the font and background colors of books, take pictures, etc. She is also using them around the house. Some days, I catch her walking around outside with them on "exploring." Although they were not bought for watching TV, she has discovered that they allow her to sit with the other kids when watching a movie! In the end, Ellie is using the eSight glasses mostly for reading, both far and near. It has really leveled the playing field for her in the classroom. We're excited to see if this piece of technology will help her close the reading gap and take on a new appreciation for reading. 

 

 

 

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