In short, the IWSA have kept me going these last 16 months since my son was born. The knowledge, the experience, the support are all invaluable. Lost without them.
The IWSA has helped me to have some really good experiences, I've learned a ton and made a lot of new friends. It has helped me to be healthier with medical information about my condition.
IWSA is a fantastic organisation, which has helped support families including my own with information, knowledge support and understanding of such a rare syndrome such as WAGR.
I've been involved with the IWSA for the past nine years and have no idea where I would have been without the support, information, and guidance of other families with loved ones with the same rare disease/syndrome. My daughter was not diagnosed WAGR/11p deletion until she was 11 years old and once I met this group it was instantly obvious that I would never be alone again in our journey. I have chosen to serve on the Board and as Board chair and have received so much more from IWSA families than I will ever be able to give. This organization is dedicated to supporting WAGR families and has been very proactive in spreading awareness, supporting families around the world, and educating doctors, teachers, family and friends. As a very small organization representing an ultra rare disease, the IWSA is making huge strides into promoting research and reaching out to help improve the lives of individuals with WAGR/11p deletion syndrome. I have checked my role as Board Member but I am also a donor and parent to an individual born with this rare condition.
This charity has helped us so much since our son was diagnosed with wagr syndrome. Without it we would be lost in a sea of unknown terms & symptoms. We would feel so alone
The iwsa has helped my family in more ways than I ever will be able to put into words. They are our lifeline.
IWSA is a really wonderful group. They support me by giving many usuful knowledge and mentally. I can't imagine how I go through this tough road without IWSA now.
IWSA has been a great help to my family. They are a wealth of knowledge and support!
The IWSA has become a lifeline for my husband and I. Our daughter is almost 15 yrs old and we have been involved with IWSA for 5 yrs. The welcoming of this group is beyond a feeling I've ever experienced. We have learned more in the last 5 yrs from our annual gatherings with IWSA families
than we did in the first 10 yrs from the many doctor appts. I'm always impressed with the amount of support each question receives when posted in our Facebook group. We can ask anything and someone will have either experience to offer suggestions or point us in a direction to find help. It's always a bittersweet when I see a new family log into our Facebook group. I'm so happy they found us and my heart aches for their fears regarding their child's future. This group has given me hope for the future, a feeling of acceptance and understanding you can't find outside this group. We have some amazing parents that started IWSA and we are so thankful for the parents that keep stepping up to the Board of Directors to continue to build our closely bonded families.
Written with so much love for the IWSA
The Carlson Family
This organization has given me so much support and hope over the rollarcoaster of this past year since my son was diagnosed.