The WAGR Warrior
November 2015
Prepare for #GivingTuesday
As we Give Thanks and Give Back   
In this edition of The WAGR Warrior we reveal the winner of the iPad in our CoRDS/IWSA Patient Registry Contest, plus we give you some great holiday gift-ideas for children with sensory issues or visual impairment.  You'll learn more about what the JWSA continues to do in Japan, and we'll share some exciting news about how YOU can be a vital part of the message and the mission of the International WAGR Syndrome Association with #GivingTuesday.  Grab a cup of tea or coffee, put your feet up, and enjoy!

Donate Now...

We are excited to announce that on December 1, following Black Friday and Cyber Monday, the IWSA will participate in #GivingTuesday.  Again, this is a 24 hour event which will include contests between participating nonprofit organizations to see who can raise the most money through on-line fundraising.

#GivingTuesday will be a fun, fantastic opportunity to help the IWSA by fundraising. Last year, the families of the IWSA and their friends and supporters participated in a similar event called Give Rare. In 24 hours we raised over $3800 - about a third of our budget for the whole year! 
#GivingTuesday will also be a golden opportunity to give back to the IWSA by becoming a volunteer. On #GivingTuesday we'll officially launch the Zebra Brigade, a brand-new Facebook group for parents, grandparents, relatives, and friends. Volunteering in the Zebra Brigade won't require a lot of time, just a heart for kids with WAGR and a desire to help.

The #GivingTuesday website is full of tools to help you promote the IWSA's fundraiser, or to create your OWN project which would raise funds for the IWSA.  The #GivingTuesday toolkit even contains tweets and status shares for Facebook which will help you make this a MOST successful fundraising event for the IWSA.

Check out our IWSA #GivingTuesday page today!  You can even make a donation today and it will count toward our December 1st total. 

Learn How to Set up Your OWN #GivingTuesday Project Page for the IWSA
And the Winner Is...
Congratulations to the Canslers, winners of the Patient Registry iPad giveaway!

Jenny and Emma present Cathryne and Wesley with the Prize
The Patient Registry iPad giveaway is over, but there's something even better to be won now: ANSWERS! When you enroll in the Patient Registry, you'll be helping to answer questions like:
  • What should doctors know about diagnosing and treating kids with WAGR syndrome?
  • Is there an effective treatment for kids with WAGR who have behavior disorders?
  • What can be done to help kids with WAGR syndrome live better, longer, healthier lives?

WAGR syndrome is considered an "ultra-rare" disorder, so every single patient counts. Your child could be the critical piece of the puzzle!  Please take a few moments and enroll today:

Click to Register

Check out this one minute video which highlights just a BIT of the excitement surrounding the enrollment in our CoRDS/IWSA Patient Registry

Amy Loved to Share about WAGR
Pass on, Post, and Peruse each and every WAGR Warrior issue!

What is one of the greatest ways to help the IWSA?  It's simply this:  forward this newsletter on to someone else by simply clicking "forward" at the bottom of the page!  Post a link to it on your Facebook page easily by clicking the Facebook share button at the top of the newsletter! 

Tweet it, pin it, READ it!

Did you know that our newsletter is one of THE most effective ways for us to raise awareness of WAGR syndrome?  Why?  Because it generates traffic to our website and our Facebook page...that traffic gets our internet pages to come up FIRST when people search WAGR syndrome. 

Why else?  It helps people learn about WAGR so that they may comfort another person whose son or daughter was just diagnosed. 

Simply said, and shooting straight from the hip, we can't get the word out without your help.

Let's all do it on the count of three...Use the buttons at the top of the newsletter to share this issue of The WAGR Warrior on Facebook, Twitter, Linked In or More!

One, Two, Three...Share!

Tara Loves a Good Gift to Open!
Great Gift Ideas!!!
by Tammie Hefty 
One of the hardest questions for me to answer is always, "What should we get Evie for ___________?"  Fill in that blank with any holiday or festive occasion you choose.

Evie doesn't play with the same toys that other kids play with, so dolls, board games, cars, video games, and all the other things that would be standard answers just don't apply here. 

I started to have to really pay attention to the things that HELPED her cope with daily life and that she actually enjoyed doing and wanted to do repeatedly.  Often, I would end up asking for therapy toys!  I know they may not seem fun, but, she really enjoys them and they give her the sensory input she needs to stay grounded. 

Here are some great "gift idea" lists that I found on-line which may help other parents who are facing the same difficulty that I face in creating a gift-list for Evie.

Parents Magazine List of Gifts for Kids with Special Needs
A List of Gifts from Lemon Lime to meet Sensory Needs
Ashlyn's Gift Guide ~ From a Blog Called Four Plus an Angel

Remember, if you find yourself without ideas on gifts, occupational therapy play ideas, speech therapy play ideas, or just ideas on parenting a child with special needs, check out our Pinterest boards! Find us on Pinterest
JWSA Families Meet in Tokoyo to Advocate for Families with WAGR

JWSA Continues to Advocate for Families with WAGR Syndrome

After several months of waiting, two JWSA (Japan WAGR Syndrome Association) families met up in Tokyo at the beginning of November to attend the Forum for Incurable Disease and Chronic Disorder in Japan. WAGR syndrome is currently not a disease on the list of diseases and disorders which receive any sort of government assistance in Japan.

Pictured above are Masayo Kamimura (President of JWSA) and Madoka Cho Hasegawa (Vice President) and their families on the day of the meeting.

Shop +1600 stores at and help raise money for the IWSA!  Order  holiday cards, buy electronics, find a gift for the person who has everything AND help the IWSA.  Who wouldn't want to do that?  Shop today at
Group photo from WAGR Weekend 2015
In the December Issue...

The December issue of The WAGR Warrior will be our year in review.  We are so excited to highlight all that has happened during 2015.  You won't want to miss it!
International WAGR Syndrome Association
PO Box 769, Hanover, PA 17331 |