The WAGR Warrior
October 2015
An Especially "Giving" Edition
Just in time for your holiday shopping! 
In this edition of The WAGR Warrior, you'll learn about some of the opportunities we have to GIVE BACK to the IWSA; easy things like raising money when you search on-line or shop on-line.  You'll also find another family's story from WAGR Weekend 2015, and you'll learn how our families in Japan are making a tremendous difference in the lives of people living with WAGR.  Don't scroll too fast, or you might miss out!
Raise $$$ for the IWSA just by searching the web!

Did you know that you can use a powerful search engine called Goodsearch and raise money for the IWSA every time you make a new search?  All you have to do is visit to get started.  Or, if you want to just immediately identify the International WAGR Syndrome Association as your charity to support, then, just click HERE and type in the full name of the organization.  Each original search will earn a PENNY for the IWSA.  If you search the internet as much as I do, that adds up FAST!

 Happy searching!
Iori I'm In
Click on Photo to Enroll in the CoRDS/IWSA Patient Registry and GO ALL IN!!!
Journey to San Diego~Amelia's First WAGR Weekend
by Melissa Kirk 

Amelia enjoying the San Diego Zoo at WAGR Weekend 2015

Here's my little story about my sweet family and our first WAGR weekend 2015.... Our first time meeting our extended WAGR family.
A little bit about myself; I'm Melissa and my beautiful zebra daughter is Amelia Rose, her daddy (my other half) is Tom. Amelia was born April 30 2014 at 11:15 in the morning. All the excitement whirled around us and we were thrilled to finally meet our sweet bundle of joy. But I felt something was off and I couldn't pin point it but there was this strange feeling deep in my gut that something was wrong. All the Drs and her pediatrician said she was healthy and sent us on our way. But still I KNEW something was wrong... My sweet babe wasn't opening her eyes.

Continue reading about Baby Amelia and her First WAGR Weekend...
Guidestar Gold means the IWSA is a transparent and trustworthy nonprofit

The IWSA has earned the gold level of participation with the Guidestar Exchange.  In order to ensure that your tax deductible donation safe and secure, you can visit the Guidestar Exchange to check out your other favorite nonprofit organizations.  The IWSA is proud to be trustworthy and transparent for our donors, and will continue to use the money donated to our organization to live out our mission. 

Check out the IWSA's Guidestar Profile

Colten's AMAZING Smile is worth shopping for...
Shop Amazon Smile and Help the IWSA!     

Did you know that the IWSA is part of Amazon Smile?  You can do some of your favorite on-line shopping from the comfort of your own home AND help raise money for the IWSA.  How much easier can it get?  To participate, just click on the link below!

The JWSA Meeting in 2014

JWSA is Making History and Changing the Lives of those with WAGR in Japan

by Madoka Hasegawa

A large step forward in the JWSA project was made in which we hope WAGR to be recognized as "designated intractable disease" by the Japanese government!

There are 306 "Designated intractable disease" now, but WAGR is not included because no researcher has recommended WAGR to government so far.
If WAGR is designated as "Designated intractable disease", government provides medical subsidy to patients who satisfy the severity they determine, funds and promotes researches of WAGR, and establishes better medical and welfare system for WAGR, and so on.

Rare Disease Day in Tokyo where we participated last year for the first time inspired us to this project. Then, JWSA has requested approval to Japanese government and relevant organizations.

At first, we didn't know what should be done. When we met government officials, they said they knew nothing about WAGR. So I had to give them a mountain of materials. I had to look for researchers frantically who cooperated with us because they said we should carry our request thorough "regular route". We did our best anyhow and went forward step by step. I was really overwhelmed by making contact with people with whom I wasn't usually involved.

At last, I got a report that tells WAGR is on a list to be considered by government! Japan Pediatric Society which has great authority in the field of pediatrics in Japan recommended WAGR to them! It's a BIG leap! A conference for review is going to be held over the next several months. We are still at the start spot now, but I believe our success. I wish we shall report good news to you next time!!  
Take time on December 1, 2015 to donate to the IWSA!
The IWSA is Gearing Up for

On December 1, our IWSA family will  come together  for #GivingTuesday, and  we  need YOU  to  join us.
#GivingTuesday is 24  hours of unprecedented nonprofit  giving which follows Black Friday, and Cyber Monday-and  it's  your chance  make  a  real difference,  right  here  in  our  IWSA family.

If you love someone with WAGR syndrome, then you love the IWSA. And by showing your love through #GivingTuesday,  you help sustain this amazing  organization, which gives so much to our IWSA families around the world.

Visit IWSA #GivingTuesday today!
You can shop +1600 stores at and help raise money for the IWSA!  Order your holiday cards, buy those electronics, find that gift for the person who has everything and STILL help the IWSA.  Who wouldn't want to do that?  Shop today at
Evie and Jenny with their white canes at WAGR Weekend 2013.
White Cane Safety Day is Right Around the Corner!

White Cane Safety Day takes place every year on October 15th.  While the level of recognition that schools, community groups or governments continues to grow, there are still people who don't know much about white cane laws, and don't know anything about White Cane Safety Day at all. 

In order to learn more about White Cane Safety Day, read what Marc Maurer of the National Federation of the Blind has to say about it.   Also, read about the Free White Cane Program at the National Federation of the Blind.
Group photo from WAGR Weekend 2015
In the November Issue...

The November issue of The WAGR Warrior will have suggestions for how to prepare for the holidays along with toy ideas for children who are visually impaired or may have sensory issues.  We'll also provide more information and resources for #GivingTuesday, and share a little about what families in Michigan are doing to raise awareness of, and support for, families with WAGR syndrome.  Be sure to share our newsletters on social media, as well as by forwarding them to your friends and family!!!
International WAGR Syndrome Association
PO Box 769, Hanover, PA 17331 |