E-news


  

Hello from Anne and Regan

regan anne 

We are so excited to take on the role of co-presidents of Northern Illinois NOAH and continue to partner with you to deliver fun events for you and your family! NOAH means so much to us and our families, and we step into this role with open hearts and minds. We have a lot of fun things scheduled for the year and look forward to seeing you at our next play date! If there are ideas or recommendations you have, we'd love to hear from you! 


NOAH Bowl-a-Thon Fundraisers 

IL Bowl 

We are in the midst of bowl-a-thon season -- there's still plenty of time to support your fellow NOAH members! Don’t miss the following events:   

  • Team Adamo - Joey Adamo - Still accepting online donations!
Learn more at albinism.org/bowl2017 

Spring Play Date


Saturday, April 29th 
www.we-goparks.org/treehouse
www.we-goparks.org/treehouse
11:15AM-1:15PM  
The Treehouse
201 W. National Street, West Chicago, IL 60185
Cost: $10/family A full lunch will be served!
RSVP:  ninoah@albinism.org by Saturday, April 22nd. 

 treehouse

NI NOAH is excited to welcome families to our upcoming spring get together at the Treehouse in West Chicago. Recommended by a local Orientation & Mobility therapist, the Treehouse is an ideal location for children with low vision to explore and play in a fun child friendly environment. We look forward to seeing all of you and your children!


 Technology Assistance Program

 

We are excited to announce the 2017 Technology Assistance program!  Due to evolving needs for technological devices for the visually impaired, we want to hear from YOU! What device do you need and what products help you or someone you know who has albinism?  More details to come on the application process!   


 Product Feature

5 products

Spring is approaching which means warm weather and lots of sunshine! NI NOAH members share what products they like to use to protect their eyes and skin. 

Tikia C. says, “In the summer, our go to's for style, protection and fun is a bucket hat in numerous colors, KidBanz sunglasses in various colors, long cargo pants/shorts and Blue Lizard Sunblock or Banana Boat sunblock.” 

Krista S. states, “Julbos are definitely my favorite sunglasses for the littles. They are very tough, there is no up or down, they are super dark and sit close to the face, and since the sides don't fold in they don't break off!  I also love eclipse sun products and their sun sleeves! I love how you can hook the thumb through so they cover the back of the hand as well. My kids get them totally filthy then I just toss them in the wash and they're good to go. http://eclipseglove.com/sun-sleeves-for-kids/  

Marysia I. suggests "My tip would be for a brand of hats called Outdoor Research or OR.They are lightweight, can get crushed in a bag and hold their shape, are machine washable, and at least the styles I bought come with a drawstring to adjust for size.  They have other styles that are better for older kids or adults.  Also the darkest swim goggles I could find are Speedo Vanquished in mirrored style." 

John C. says " We never go to the beach without bringing along our sun tent. It's convenient because it folds flat and you can carry it on your back. It's great for day trips to the beach. We bought ours from One Step Ahead."

Kelsey says, "Topping my list of summer must-haves are my trusty sunglasses and a big floppy hat."
 


 Family Spotlight

webster family

We are the Webster Family - Bryan, Joyce, Madeleine (9), Owen (4), and Bennett (1) - and we live in Oak Park, IL. Madeleine and Bennett both have Ocular Albinism. We have been NOAH members since getting Madeleine's diagnosis 5 years ago. At that time, we were so terrified not knowing what kind of life our daughter would lead. We focused on all of the "could nots" and the "may nevers", unable to imagine a normal life for our daughter. In the intervening years, NOAH has been an invaluable resource as we have tried to balance meeting the needs of two kids with Albinism and letting them explore and conquer the world....and conquer it they have! Madeleine has a brown belt in karate, swims competitively, and is obsessed with reading Harry Potter. When Bennett was born last year and we noticed his nystagmus, instead of being terrified like we were 5 years ago, we felt confident he would lead a rich and fulfilling life. We cannot wait to see what feats he accomplishes! We look forward to meeting other NI NOAH families soon!  

 

 

 

 



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