Join the IWSA and WAGR families for a weekend of fun, education, and friendship, July 17-19 in Raleigh, North Carolina, USA. Hosted by the IWSA and the Cox Family.
Friday afternoon/evening hotel check-in and informal group dinner at the hotel. Saturday Family Meeting and lunch, and Saturday evening Carolina-style barbecue dinner followed by music and karaoke for all! Optional group activities are being planned for Sunday.
More information will be shared soon!
We hope to see you there!
WAGR Weekend is a wonderful opportunity for families to meet with others who understand the stressful challenges and special joys of caring for a person with WAGR syndrome. It is also an occasion to learn about current research and care management for individuals with WAGR syndrome, as well as updates on the activities of the International WAGR Syndrome Association.
Each year, WAGR Weekend takes place in a different location, and is hosted by an IWSA family. Specific presentations and information sharing vary from year to year, however, the focus is always on education, research, and family support.
The 2026 Family Meeting, held on Saturday July 18th, will be available live around the world via Zoom.
To help with planning of meals and activities, please complete the registration form to let us know how many will be in your group. There is no obligation when you fill out the form.
Please note: The registration form to join the Family Meeting via Zoom on on Saturday, July 18th will be available soon. It will also be recorded and shared for viewing at a later time.
We have arranged a group rate of $139 (plus taxes) per night. Breakfast is included in your room rate.
Springhill Suites by Marriott, Raleigh/Apex
1100 Marco Drive
Apex, NC 27502
phone: 919-335-0135
For reservation assistance or help with questions, contact Maria.D.Eaton@marriott.com or call her at 919-335-0135
{The} Impression which leave this meeting with me is for an exclusive commitment, tolerance, understanding, friendliness, responsiveness and solidarity to those families who have found a great way through the collection of a one weekend to share their experience and knowledge, to share the full range of emotions surrounding the upbringing of a child with WAGR syndrome. After such a meeting filled with many activities (games , entertainment, mom’s night, shared breakfasts, lunches and dinners, charity raffle, meeting with doctors, useful and educational presentations, etc.), I was really very happy confident and informed, especially with many new friends and memories that warm my heart.
There is something magical about being in a room filled with people who get what you have been going through without ever having to say a word. It was no longer about explaining and more about sharing which I have always been thrilled to do.
I was welcomed by big smiles like the sun of San Diego and warm hugs. My heart was full of delight in meeting everyone – lovable children, their families and awesome board members. Mom’s night with warmth, laughs and tears were emotionally stirring. Especially experienced mom’s words penetrated my heart. New knowledge presented by specialists and fun time at San Diego Zoo were, no doubt, valuable.
Start training for WAGR Weekend early in the year. Put plenty of sleep in the sleep bank so you can make several big withdrawals, exercise your vocal cords so you can talk nonstop, drain your tear ducts so they won’t constantly overflow, and build up your abs so they can withstand prolonged laughter. All the work is worth it, though. There’s no high like a WAGR Weekend high!
For the first time in a while I felt like I innately belonged to this group of people. We were magically joined together by our amazing children. I was not an outsider looking in, nor was I in a fishbowl for others to examine. Even though I have never met any of the fellow WAGR families prior, those three days felt like home at heart
I’ll never forget how welcomed I felt walking into the lobby of the hotel; the culmination of the many months on the internet. We met so many wonderful people with shared experiences. I felt an instant bond. We were overwhelmed with the generosity of this instant family.
The highlight of my trip was during the most vulnerable part- dad’s night. I wasn’t sure what to expect and it was definitely a moment when I could have questioned myself as a father, but I didn’t. I didn’t because of the support I got from all the other dad’s who have traveled and would soon travel the road I was on. We laughed, we got misty eyed, and we grew to be stronger and better people and that made us all better fathers.
If you have ever had doubts about attending WAGR Weekend, GO!!!!! It was an environment where everyone was accepted for who they are, no questions, bottom line. We felt absolutely loved and absolutely accepted by every single person we met.
Moms night always makes me realize that I truly am not alone in this journey even when I feel so alone. Thank you ladies you are truly my family I never knew I needed.
It was inspiring to spend time with a group of families and their children, challenged and not, and to see that similar challenges are experienced by all. Even more inspiring are the siblings of our special children and the love and understanding that they exhibit. My only regret is that our two younger daughters were not able to attend.
Contact Kelli Cox at kellicox64@gmail.com or Shari Krantz at shari.krantz@wagr.org
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