The WAGR Warrior
September 2015
WAGR Weekend 2015 Edition
In this issue of The WAGR Warrior, enjoy reading about the experiences of the families who attended WAGR Weekend 2015 in beautiful San Diego, CA; but there's also much, much more!  You won't want to miss a single article!
Most of the WAGR Weekend 2015 Families at the San Diego Zoo
WAGR Weekend 2015

WAGR Weekend 2015 took place in San Diego, CA the last weekend of July.  All the families were greeted by sunshine and ocean breezes which set the tone for a fabulous weekend.

Many thanks are extended to the host family, the Volks (John, Leslie, Ashley, Brittany, and Chelsey) along with Karen Vaughn who did an amazing job at planning a weekend that none of us are soon to forget. 

From Moms' and Dads' Night Out, to wonderful discussion sessions with CoRDS, Dr. Dome, and Dr. Han (via Skype); touring the world renowned San Diego Zoo, and dining in a special room there just for us...the only thing we were left longing for was a few more days to spend together.

More than twenty families attended this year's WAGR Weekend, you can read three of their stories below!


The Katsumoto Family at WAGR Weekend 2015
How WAGR Weekend Becomes a Home...
by Ayana Katsumoto 

Our first visit to the WAGR Weekend turned out to be one of the most amazing experience in our life. We are the Katsumoto family from Japan. Asahi is our son with WAGR syndrome. I would like to share what we felt from our trip.

Our first thoughts for attending the WAGR weekend began a year ago; the same time when we first made our contact to the IWSA. Those days, I was having difficulties to know what my son is dealing about. IWSA was the right group to learn and share. It was a natural feeling to want to meet everyone. The rough part of preparing the trip was to make his passport. I believe that it is hard for every one year old child to sit properly, but to our child it was hard to make him look straight into the camera. We had to make variations of noises to keep his attention.

Continue reading about the Katsumoto's WAGR Weekend...
Gunkle I'm In
Adam Gunckle is In!
How to Win an iPad from the IWSA!       
  by Jenny Gunckle

I'm writing today to update all of you on an exciting opportunity related to the CoRDS Patient Registry. There was a lot of talk about this at WAGR Weekend this year and, boy, is this a HUGE opportunity for all of the families of the IWSA. Here are a couple of big ones that come to mind:
 
1) Once you fill out the survey and have all of this information in one place, you can print it and bring it with you to doctors visits, etc. , to use as a reference.

2) The registry will help to identify (and quantify) different anomalies that pop up with our kids (How often does ___ happen with these kids? If my child has this symptom, should I be worried about ___? Is ___ a "WAGR/aniridia/11p thing"? Should I be watching for ___ with my child? How long should I screen for ___?) The list of possibilities is endless!

3) By collecting all of these current statistics, it will be available for individuals in the medical profession to use. The hope is, by having it so easy for them to access, it will be enticing for new research papers or studies specific to our children!! How exciting is that??

So, I'm pretty sure we all can agree that all of this is great. But, here's the thing....I know we all lead busy lives. Without solid deadlines and/or accountability, it is really hard to sit down and commit to something. (I will confess here and now, for that very reason, I have not yet submitted Emma's information. Whoops.) In fact, to date, we only have about 25 families that have participated in the registry. I KNOW we can do better than this, guys!!! So, let's generate some hype and GET-ER-DONE for our kids!!

Here's the fun part (in 4 easy steps):

Step 1) Fill out and submit the survey here https://cordsconnect.sanfordresearch.org/.../sf/screeningForm...#
(you can save it and reopen however many times you need. I'm going to commit to getting it done tonight before I'm allowed to have my evening glass(es) of wine!)

Step 2) Take a picture of yourself with the button/magnet you received at WAGR Weekend OR with the printed piece of paper. Find the images to print http://wagr.org/?page_id=5455
 
Step 3) Post that picture on this IWSA Support Group Facebook page to let everyone know you ROCK and "are in" and want to enter the contest! (bonus points if you make that picture your profile picture.)  If you do NOT have a Facebook account, you can e-mail your photo to reachingout@wagr.org to be in the drawing.

Step 4) Do all of this BEFORE OCTOBER 16th and you will be entered into a drawing to win an AWESOME prize!!!!  (IWSA officers and board members are not eligible to win.)

Note: All of your personal information (name, etc.) is protected on the CoRDS site, so the IWSA does not have any way of knowing who has and has not yet submitted the survey...the only way to enter the contest is to tell us you did it!!

The MORE hype we can create around this, the MORE people we will be able to encourage to fill this out, and the more powerful the results!! We are a "rare" community.... EVERY ENTRY MAKES A DIFFERENCE!

Iori I'm In
Iori is In!!!

The Hamptons and Hillmans in sunny San Diego at WAGR Weekend 2015
The First WAGR Weekend for this West Coast Family

by Mary Hampton

In July, we attended our very FIRST WAGR Weekend. Adyson is 10 years old and we'd never had the opportunity to attend before. We are from Washington, and with WAGR Weekend being on the west coast for the first time, we decided we needed to find a way to make it happen. We were excited to meet other families who could relate to ours. Adyson had never met another kiddo with WAGR who had been through what she had.

Continue reading about the Hampton and Hillmans' first WAGR Weekend...
The Hasegawa Family at WAGR Weekend 2015
When Desire Overcomes Anxiety...

by Madoka Hagesawa 

"Can I communicate with families whom I meet for the first time in English? I'm shy with strangers."

"If Iori has some medical treatment overseas, how much will that cost?"

"Before we meet everyone, we may exhausted by an 11-hour/9000km flight with restless Iori."

"Can I spend a whole week with my husband without fighting?" - Women are always realistic!

Our first WAGR Weekend was a new challenge for me; we take up really many challenges in this puzzling WAGR world!

I discovered IWSA about a year and a half ago when Iori's chemotherapy to NRs [Nephrogenic Rests] was close to the end. On the website of IWSA and the confidential Facebook group, there was lots of living information of WAGR which I couldn't get from Japanese information network. Many friends who shared their sorrow and happiness and who sympathized with each other were there. Thanks to them, I was lonely no longer and got courage to live positively. I desired to meet such awesome IWSA families face to face. That desire was above anxiety. 

A CoRDS/IWSA Patient Registry Webinar!

The IWSA and CoRDS, (Coordination of Rare Diseases at Sanford), will present a 30-minute webinar on the CoRDS/IWSA Patient Registry on Wednesday, September 16 at 11am (US Central Standard Time).

The webinar is free and open to anyone, but can only accommodate the first 25 attendees. A demonstration of the CoRDS/IWSA Patient Registry will be given, along with specific examples of how data from the registry will benefit participants. There will be an opportunity to ask questions at the conclusion of the webinar.

To attend the webinar: 
1) Go to the following link on your computer, tablet or smartphone:  https://global.gotomeeting.com/join/892910653
and 
2) J oin the audio here:   1-866-718-3412    Enter Participant Passcode: 3694164#

If you cannot attend the webinar LIVE, the IWSA will be adding a link to the recorded webinar to our wagr.org website as well as the IWSA Facebook page as soon as a link is available.   
Just a few of the
IWSA Volunteers
It's your Time!

Have you ever wondered what it takes to be a volunteer for the IWSA?  The number one requirement is DESIRE!

The IWSA is run 100% by volunteers, and we are always in need of more.  We are currently taking applications for President and Vice-President positions as well as the New Parent Coordinator, Educational Consultant, Fundraising Coordinator, and WAGR Weekend Coordinator positions. We'll be looking to appoint those leaders by the middle of October.   You can find the job descriptions for these positions on our IWSA Website.

So, if you've been wondering when is a good time to start volunteering with the IWSA, NOW IS YOUR TIME!!!

You can take your first step by filling out our Volunteer Application today!
In next month's issue...
Kadina can't wait for next month's newsletter! 

The October issue of The WAGR Warrior will be another must-read with more WAGR Weekend stories from families who attended the annual gathering, suggestions for how to help raise funds for the IWSA, and the encouraging story of the difference that families in Japan are making for those living with WAGR syndrome.   We will see you in your e-mail in-box in October!
International WAGR Syndrome Association
PO Box 769, Hanover, PA 17331 | www.wagr.org 
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