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International Wagr Syndrome Association

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Eye Diseases, Blindness & Vision Impairments, Health

Mission: The mission of the IWSA is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives.

Community Stories

53 Stories from Volunteers, Donors & Supporters

2 Andrea H.1

Client Served

Rating: 5

This organization has familiarized me with the unfamiliar, connected me with others when I felt alone, answered my questions when I had none, and provided me hope when I felt hopeless. My son was born with WAGR 12-31-12 and when we were given the news of this ultra rare syndrome, I thought life was over, but then I was introduced to a this organization I realized my life had just began. Here is my little boy praying at church and we are not only blessed by him, but also this wonderful organization which is an extension of our family.

Andrea D.4

Client Served

Rating: 5

I have no words to describe the help this association has given me with my son! The love...the support...when I’m feeling lonely and desperate I know there’s always somewhere I can turn!!!

Client Served

Rating: 5

This organization has been instrumental in helping me to learn more about my daughter's genetic disorder. They offer support in a way that helps me to feel less overwhelmed and more empowered as a parent. The people involved and in the community are like family and have blessed the lives of my family.

2 Shanna Landry B.

General Member of the Public

Rating: 5

It's been 17 wonderful years since I found the International WAGR Syndrome Association. They have been my greatest support system ever since the day I've taken my son home from the hospital. From the first terrifying moment my son was diagnosed with cancer, throughout this amazing journey of his life, IWSA has been there for my family. The IWSA is the best resource concerning this rare genetic disorder, WAGR Syndrome, because all of its members have been touched by it. THANK YOU IWSA and all of its families for the wealth of information, incouragement, support, and for helping me stay on top of Braxton's medical needs. My son has flourished all these years and continues to thrive!!!

Aaron C.2

Client Served

Rating: 5

Amazing, hard working association raising awareness for the very rare medical condition ‘WAGR syndrome’. Please keep up the hard work, you are extremely important and are the voice for our kids. Thank you

1

Volunteer

Rating: 5

This wonderful organization helps us through life. With our son with a rare genetic disorder we have to face many challenges, a range from daily life to specific doctor appointments. Without the help and knowledge of IWSA we would be alone in this jungle.

1 Heidi L.1

Client Served

Rating: 5

The international WAGR syndrome Association has been my rock whilst trying to parent my daughter. Parenting is a tough gig for all of us. Parenting a special needs child is even tougher. Add to that a very very rare condition and some really complex medical and behavioural issues and you have this woman's worst nightmare! Thanks to the people at the IWSA I can face not only each hurdle as it arises, but I can face each day as it unfolds with it's own unique challenges.

Client Served

Rating: 5

When I first had my daughter, I was overwhelmed by all of the aspects of WAGR. This organization not only put me at ease, but made me feel not so alone. They have guided me along the WAGR journey, sharing research findings and and really great advice. I honestly don’t know where I’d be without them.

General Member of the Public

Rating: 5

16 years ago our Grandaughter was born with a very rare syndrome. The pediatrician didn't know much about it either and read a short paragraph out of the medical journal. I started searching the internet and came upon IWSA. They were our source of all our information, and taught my granddaughters doctor all about it. Besides the wealth of information, they became our cheer warriors, our prayer warriors and go to warriors. Today our Alyvia is amazing us all and we couldn't be more proud of her and this group, that has been by our sides watching her grow.

Catherine M.1

Client Served

Rating: 5

Without this organization I would of been completely isolated to deal with so many diagnosis and deal with the rollercoaster of WAGR on my own. This is my extended family with support and without them our children multiple diagnosis. Would of never been studied and or changed in medical history. My son is healthy as he could be because the efforts this organization has made with the medical community.

Jamie R.1

Client Served

Rating: 5

IWSA has been a life saver group to our family. We have a 14 year old child with WAGR 11p deletion. With all the medical complications our child has endured, this group has helped guide us through the toughest journeys over the past 14 years. The emotional and educational support we have received over the years is the biggest gift we could have ever received. We are so blessed to be part of the IWSA group.

1

Board Member

Rating: 5

I have served as a volunteer leader for this organization since my daughter was diagnosed with this rare genetic syndrome. The International WAGR Syndrome Association promotes awareness, stimulates research, and supports families affected by WAGR syndrome. The syndrome is ultra rare, with less than 500 diagnosed cases worldwide, and the IWSA provides information for families, physicians, researchers, educators and others in an effort to improve the quality of life for individuals with WAGR syndrome. The IWSA is a dedicated group of people helping others around the world sharing similar experiences with their loved ones.

1 Melissa K.1

Client Served

Rating: 5

When my daughter was first diagnosed with WAGR syndrome our world came crashing down and we felt so alone... I reached out to the IWSA and they helped our new world not feel so scary. The support from the IWSA has been unlike anything I've ever experienced and our family is beyond grateful. From the beginning the IWSA and its members have been a second family to us and because of them we will never feel alone. We are so proud of all that the IWSA accomplishes and overwhelmed with love. Thank you IWSA!

Client Served

Rating: 5

The IWSA isn't just a charity, it's a second family to all of the individuals and their loved ones affected by this very rare syndrome. WAGR is an acronym, not all of those diagnosed will present all four aspects. My son Bryan has them all and more. Through the hard work and many hours of fund raising, meetings, website creation and research, our "family" has come a long way towards helping the newly diagnosed. I can honestly say that Bryan's unexpected progress, both medical and physical can be attributed to the IWSA. It is the "go to" resource for families, doctors and all who care for our special loved ones!

1 Michelle C.2

General Member of the Public

Rating: 5

Hi!! We are from the UK, and this organisation has helped us through one of the toughest times in our lives. Our 1st child, a little girl called Grace, was born on 18th september 2014 with WAGR Syndrome. With the help of the amazing people from this organisation, we got some much needed information, answers and support that we needed, and for that, we will be forever grateful. Thank you

2 Tom C.1

Board Member

Rating: 5

Highly committed volunteers who are compassionate caregivers, family members, and friends. So glad to have been a part of this organization for the past 17 years or so!

1 Chantal D.

Volunteer

Rating: 5

From day 1 after the diagnosis they always proactively helped us! They provided us and our medical specialists all the necessary information. In the Netherlands we needed more information than available. The support for us as wagr family is really great! I love the IWSA
Feels like family.❤ recently I decided to be a volunteer and give other families the support we received from IWSA.

1 Deanna M.1

General Member of the Public

Rating: 5

This association has been completely amazing with helping me learn and understand the health and difficulties we may face. They are quick to answer any questions and our extremely supportive!!

1 Shirley M.1

Client Served

Rating: 5

I'm the mother of an adult son with WAGR. The IWSA has been extremely helpful to me while facing the challenges of this rare syndrome. There wasn't much information around about WAGR while my son was growing up, so I'm thankful to have such a proactive, informative, and invaluable organization for much needed support now. My son and I had never even met another person with WAGR until we attended a yearly family get together, thanks to IWSA and the amazing people who advocate for our loved ones through the association. It also warms my heart that, with this organization, no other WAGR child or family member will have to worry and wonder alone about what will come next and what treatment options are available. IWSA's efforts with research, sharing the information, and connecting families is a much needed lifeline.

1

Advisor

Rating: 5

IWSA has been a great support system for my family. They have gave us encouragement and helped educate us about WAGR syndrome. I am honored to be part of this fantastic group.

Previous Stories
3

Client Served

Rating: 5

The IWSS has been amazing for my family. Offer a great support group, educational information and has very useful information.