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Join the IWSA and WAGR families from around the world for WAGR Weekend 2025, August 8-10, by the sea in Arundel, West Sussex, United Kingdom. Hosted by the Colhoun family.
There will be IWSA organization updates, information about WAGR syndrome and current research, presentations by UK experts, and plenty of free time to visit with old friends and make new ones! The Weekend begins Friday evening with a group dinner at the hotel.
The first WAGR Weekend took place in the United States in 2000, with several families gathering to support one another and share experiences. Over the years, the event has evolved, and WAGR Weekends have taken place in the United States, Europe, and Japan.
WAGR Weekend is a wonderful opportunity for families to meet in person 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 new therapies and treatments for 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.
In the US, special evenings called "Mom's and Dad's Night Out" provide an intimate opportunity for parents and primary caregivers of individuals with WAGR syndrome to safely share challenges and accomplishments and simply be with others who understand their lives.
Each year the event takes place in a different location, hosted by an IWSA family or multiple families. If you are interested in hosting a WAGR Weekend or helping with planning or at the event, contact reachingout@wagr.org
The IWSA supports WAGR Weekend expenses through family fundraising efforts, the generosity of local businesses and community and corporate sponsors, as well as grants and other sponsorships. Host families often raise awareness and funds locally for the annual events through focused community outreach. The IWSA supports these efforts and produces materials that can be used for fundraising activities.
For more information about how to get involved with WAGR Weekend planning, fundraising, and/or sponsorship opportunities, email reachingout@wagr.org
{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.
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