The IWSA nonprofit organization has been a part of our lives since the birth of our daughter. We have made invaluable friendships and connections with families who are in our same circumstances and that never would have happened without this organization. The research being done and the information provided is a real life saver! Thank you
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We would be lost with the IWSA! We attended our first event when our daughter was 3 years old, and we learned so much. Mostly that we were not alone, and that everything would be okay. Our daughter is now 25 years old and she is as successful as she is, in great part because of the members of this organization and the friendships we have formed because of it.
This rare disease non-profit does great work in promoting awareness, stimulating research, and supporting families affected by this particular genetic disorder. Not only that but the IWSA is made up of great people; many of whom have become like family to us over our quarter century of involvement.
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Our family has been connected with the IWSA since almost the very beginning. Along the way, we've made friends, compared notes, hosted and attended gatherings, and continued to learn together about this super- ultra-rare syndrome. We are blessed to be a part of the IWSA and to know some of its families.
Our daughter Grace was born with wagr syndrome and it soon became apparent from talking with doctors that this was an ultra rare condition. My wife and I was scared and had so many questions.
We found IWSA and the support and advice our family received from them helped us get through one of the most challenging periods of our lives and we are forever grateful to them.
My wife and I are now volunteers and UK representatives as well as me being a board member.
I can honestly say this charity has had a massive, positive impact on the whole of our family. Thank you IWSA.
Aaron, Michelle, Grace & AJ Colhoun
Very family centric providing ongoing support for my family and others affected by WAGR Syndrome. Without them, my daughter's physicians would have less understanding of the syndrome and issues she may have to deal with.
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When ourn daughter was given a diagnosis of WAGR, my wife and I were upset but also very scared. Scared of the unknown road ahead of us. We were also lacking much support from our medical providers as most of never even heard of WAGR, let alone met someone with the diagnosis. We were so fortunate to have the IWSA and all of the supportive families we met through the association. We have gained a better understanding of WAGR and our daughter, but have also through their assistance, grown to be advocates for Miranda and others with WAGR.
IWSA is an amazing leader for the WAGR community and the entire Aniridia community. I've learned so much working with IWSA leaders on other Boards and as partner organizations. The team is professional, thoughtful, transparent and inspiring. Thank you IWSA for all it does. The organization and its leaders are making a real difference.
The International WAGR Syndrome Association (IWSA) has been nothing short of a lifeline for me, my loved ones, and countless others navigating the complexities of WAGR Syndrome. From the moment we connected with this organization, it became abundantly clear that we had found a source of invaluable support and knowledge.
One of the most striking aspects of our experience with the IWSA has been the depth of medical knowledge and expertise available to us. Through their resources, we've gained access to strategies and mechanisms for managing WAGR Syndrome that simply aren't available elsewhere. In a world where awareness of this condition can be scarce, the IWSA stands as a beacon of understanding and guidance.
But it's not just about information; it's about the genuine care and support that emanates from every interaction with the IWSA community. Whether it's through online forums, support groups, or direct communication with staff and volunteers, the love and compassion we've encountered have been unparalleled. In moments of uncertainty or difficulty, knowing that we have this unwavering support network behind us has been incredibly comforting.
In summary, the IWSA has made a profound difference in our lives and continues to be a pillar of strength for individuals, caregivers, and families affected by WAGR Syndrome. For anyone seeking understanding, guidance, and a sense of belonging in the face of this condition, I cannot recommend the IWSA highly enough. They have truly been a blessing, and for that, we are endlessly grateful.
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The IWSA has been instrumental in all facets of my son's journey with WAGR Syndrome. They offer support, guidance, and assistance whenever needed. I would be lost without this organization!
As a member of the wider aniridia community, I'm so thankful for IWSA. They are an excellent example of how a non-profit should be run. As I speak with parents of a newly diagnosed child with aniridia, it can be very difficult for a parent to discover that their child has WAGR instead of "isolated" aniridia. When that happens, it is so reassuring to know that I can recommend the IWSA to that parent, and to know that they will be fully supported in their journey by these amazing people.
I've had the privilege of working with some of the IWSA board members on other projects, and they are a fantastic group of people with a wealth of knowledge who take their role at the IWSA extremely seriously. The amount of time and volunteer effort they put into the organization is incredibly commendable.
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I'm thankful for the IWSA and their tireless work advocating for and facilitating research related to aniridia and WAGR syndrome. They are a fantastic group of people doing amazing work in the rare disease world!
The IWSA helped us so much after we got our daughters WAGR Syndrome diagnosis when she was 4 weeks old back in 2014.
The IWSA gave us so much information of what the next steps should be with regards to speaking with Dr's, other medical professionals that we were going to need to have appointments with, from eye specialists to paediatricians for child development input. They put us in contact with other families in the UK who had children with WAGR syndrome; which was so helpful to be able to speak to someone who had already been through what you are now experiencing. Being able to ask those difficult questions, ask for advice, or tips.
One of the main things that the IWSA do is organise yearly WAGR weekends both in the US as well as in the UK/Europe. This is such an amazing opportunity to meet up with other families from across the world, being together, supporting each other, sharing information, being updated with any new research that has been done, as well as detailing how ongoing research is going. Being together, with other families who understand, is something you can't really put into words. It is just incredible, and such a blessing.
WAGR Syndrome is such a rare condition, this charity makse such a difference to each and every familiy that joins, the connections we have been able to make, and the supThe IWSA helped us so much after we got our daughters WAGR Syndrome diagnosis when she was 4 weeks old back in 2014.
The IWSA gave us so much information of what the next steps should be with regards to speaking with Dr's, other medical professionals that we were going to need to have appointments with, from eye specialists to paediatricians for child development input. They put us in contact with other families in the UK who had children with WAGR syndrome; which was so helpful to be able to speak to someone who had already been through what you are now experiencing. Being able to ask those difficult questions, ask for advice, or tips.
One of the main things that the IWSA do is organise yearly WAGR weekends both in the US as well as in the UK/Europe. This is such an amazing opportunity to meet up with other families from across the world, being together, supporting each other, sharing information, being updated with any new research that has been done, as well as detailing how ongoing research is going. Being together, with other families who understand, is something you can't really put into words. It is just incredible, and such a blessing.
WAGR Syndrome is such a rare condition, this charity makse such a difference to each and every familiy that joins, the connectionsport we have recieved, is just incredible.
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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
Just want to say how grateful I am to the IWSA and how impactful they have been to my family since my daughter Grace (now 9 years old), was born with WAGR syndrome.
Their dedication, effort, support and commitment to kids and families with WAGR is life changing and my family and I are forever grateful.
This charity genuinely changes and impacts peoples lives and I’m so proud to be associated with such an amazing cause.
Thank you for everything you do guys and keep up your fantastic work.
Aaron, Michell, Grace & AJ Colhoun
Littlehampton, UK
The IWSA has been an invaluable resource for our family. After the WAGR diagnosis of my niece 10 years ago, we had more questions than answers and the IWSA was there to help guide us. We're grateful the IWSA is so dedicated to promoting awareness and research on this rare disease. Connecting with other families at WAGR Weekend and learning their stories has been a lifeline. Thank you IWSA!
IWSA has been a tremendous support, knowledge and information for my family as my 36 year old daughter has WAGR syndrome. IWSA offered us the answers and that doctors and professionals couldn't answer. IWSA is like a family and a lifesaver.
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This group has been a lifesaver to my daughter who has WAGR and sanity to myself and family. My daughter was 18 when we first found this group. We were given advise to check kidneys for FSGS, other health issues which were never mentioned to us by doctors. Doctors here in UK, 23 years ago could not give us much information. Since joining this group we have connected with other families going through the same hurdles as us, having the same problems as us, and behaviour issues.
Our daughter Amber is 32 years old and 30 years ago there was nothing and nobody where we could ask help or share emotions and experiences. Many new famelies contacted us as we where 1 of few people in the Netherlands. It is so much easier to share with other parents via a website. And as a member of the the IWSA you are in contact with parents all over the world. They understand what you are talking about and can advice you where to look for help if you don't know where to go. We have participated in a WARG weekend in Belgium with our daughter. She has made a friend and we also have had nice conversations and even lots of fun. You easely exept the other children. we know it is always a challange because of the rarety of the disease. So much is still unknown and by meeting each other emotion and knowledge is shared which is invalueable and a comfort for you as a parent. We support the IWSA whole hartely, good work, keep it up.
I am proud to represent the IWSA as a board member and European Representative. The IWSA continues to raise awareness for WAGR Syndrome, connect with researchers to stimulate very important and much needed research, connect with other Rare Disease organizations around the world and support families affected by WAGR syndrome. Over the years, the IWSA has become a true International organization, serving WAGR patients and their families on different continents.
The IWSA has not only made our life a little brighter but it has touched many lives of families living with an individual with WAGR around the world.
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I am proud to present the IWSA as a board member and European Representative. The IWSA continues to raise awareness for WAGR Syndrome, connect with researchers to stimulate very important and much needed research, connect with other Rare Disease organizations around the world and support families affected by WAGR syndrome.
The IWSA has not only made our life a little brighter but it has touched many lives of families living with an individual with WAGR around the world.
The leaders of IWSA are a force! They've created a network of family support along with clinicians and researchers that is unmatched. The team is so resourceful and can make so much happen with limited funding. IWSA is making such a difference for those living with WAGR and related diseases. I've learned so much from ISWA as a parent of a child with Aniridia and a working partner with IWSA leaders. Our Aniridia-specific organization would not be where it is today without the support and example of IWSA.
Excellent family support and advocacy! The relationships that have been built with medical professionals are priceless!
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Read moreThe International WAGR Syndrome Association has been invaluable in helping us to navigate our child's diagnosis by connecting with other families experiencing the same things. With a complex diagnosis like this, it is so important to stay connected with other families for support and to help us learn how to better raise awareness for this ultra-rare syndrome along with fundraising to promote research. It is our hope that through this community, working together, we will be able to provide better treatment options and futures for those who are affected by WAGR Syndrome, now and in the future.
This organization is great source of support and encourages famlies to participate in research studies in order to learn more about this rare medical condition . These research studies help kids and adults like myself live their life to their full potential.
The IWSA supports families around the world by providing information, hosting the annual meeting called "WAGR Weekend", collaborating with researchers, hosting a private group for parents and caregivers, and working with other rare disease groups to improve the lives of patients with WAGR syndrome. The IWSA relies on donations from individuals, foundations, and persons interested in helping to raise awareness of this rare disorder.
The organization strives to be transparent about how it provides services. Information about WAGR syndrome and how to support the organization is available at www.wagr.org
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IWSA families around the world are served and supported by a dedicated group of volunteers. With about 500 diagnosed cases in the world, WAGR syndrome is ultra rare so the community and comradery fostered by this non profit is priceless.
Very supportive to our rare disease community. Thy have taken great efforts to expand global awareness and support.
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As a new parent of a daughter with WAGR syndrome, wagr.org was not only extremely helpful for my wife and I as we navigated our new rare disease world, it was also helpful to our daughter's physicians. The website gave us valuable and accurate info on which doctors, services, tests that we needed to consider in our daughters care. We would have been lost without them!
I'm so proud to be a part of this organization. The IWSA is a very small group that works hard to be strategic and transparent, to learn and grow, and to keep improving its ability to fulfill its mission.
The IWSA has been a support system for our family for many years. They are a safe space to turn to when things get rough and are always willing to help us navigate the uncharted waters of having a child with an ultra rare disease.
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The IWSA continues to support families (like ours) in the US and across the globe. We are so grateful for all of the work that they do to ensure families impacted by WAGR syndrome have the tools they need to succeed and navigate the world of being a parent to a child with WAGR syndrome and complex special needs.
The IWSA is the leading voice on this ultra- rare disease. The recently upgraded website is the best repository of information not only for families but also for medical personnel and researchers.
Our daughter and family have benefited greatly from our participation and involvement in the IWSA. We have learned a lot and and built lasting relationships through the efforts of the IWSA.
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Our family has greatly benefited from our involvement with this organization for 2 decades now. There is great encouragement and support shared among these families, along with the best website in the world on the subject of this rare genetic syndrome. We have formed valuable relationships from our involvement with this nonprofit. Glad for this work!
I LOVE being a part of this incredible community! As a volunteer, I love knowing my time and efforts make a difference, and are truly appreciated. The IWSA also fills a very important place in my heart as a mom. These families hold me up when I hurt, and celebrate with me over every hard-won triumph. I'm grateful to everyone who keeps the light of the IWSA shining!
5 stars certainly does not seem sufficient to describe the impact this organization has on those impacted by WAGR syndrome...
The IWSA provides hope for families touched by this rare disease. In particular, over the past few years, various advancements in medical research have the potential to positively impact so many lives. All of this said, the support of this community has been a lifeline - not only to my family - but to so many others around the world!
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Doing amazing things for the WAGR community which includes my 7 year old son. I am pleased with the direction the IWSA is going. I have seen alot of organizational growth since I first was introduced to this organization.
The IWSA changed my family’s life! Our son was diagnosed with WAGR Syndrome at 6 months old and the IWSA was our guiding light to help us through the bumps along the way. I wouldn’t have made it through with this organization.
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This nonprofit hold a special place in my heart. The continued efforts put in to make sure the WAGR community is up to date with research information and offering family support is priceless.
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I have been supported by the IWSA for a little over 6 years now. The huge strides this NPO has made in the last few years gives me nothing but hope for the WAGR community.
I am Chair of the Board of this organization, and Director of Research and Medical Advocacy, and the mother of a person who has WAGR syndrome. I am so proud of the work this small but mighty group is accomplishing. We strive to be the best possible stewards of the funds donated to us, and to turn those funds into better medical care, powerful and exciting research, and family support that makes a real and lasting difference in people's lives. We are very grateful for the confidence our donors have in us, and we work hard to make them proud.
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As a volunteer for this organization, I can vouch for the IWSA's determination to manage its income as carefully, thoughtfully, and transparently as possible. With an all-volunteer staff, negligible overhead, and passionate supporters, all of its resources go directly to programming.
And as a parent whose child has benefited tremendously from everything the IWSA does, I can testify to the fact that this group makes every dollar accomplish life-saving, life-changing things.
IWSA is very important for us. We are living in the Netherlands and iwsa provids us all necessary information to.give our daughter the best healthcare! Thank You so much!
The IWSA has been a lifeline to my family as we travel the road of raising our daughter with a rare disease.
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We live in the Netherlands, a small country and i couldnt find enough info. When i found IWSA we didnt only found info and a lot of knowledge but also a family! People who understand and helped when our doctors couldnt or didnt have answers!
i cant imagine a live with our daughter, who has wagr syndrome, without IWSA.
Next year we will meet many WAGR families in the US at WAGR weekend 2020.
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We are from the Netherlands and the iwsa is so important for us!! We would be lost without iwsa. They support us and do research and now we volunteer to support other families affect by wagr. They are my family!
Absolutely fundamental in supporting and advising all affected by WAGR!!
The IWSA dedicate there time to reach as many as they can.
Thank you
The IWSA has been integral in providing Us and people all over the world with information about WAGR syndrome and teaching us how to advocate for our children in a global way. Thank you iwsa, for making a difference in countless lives!
This non profit group supports families around the world by providing information and support related to the ultra rare WAGR syndrome. I attended two of the group's annual family weekend events--one in the US and one in the UK--and saw firsthand how important it is to spend time with others who share similar lives and experiences. For most of us with WAGR children in our families, time together and experience sharing is precious! The IWSA supports families with newly diagnosed children so they never have to face the challenges alone. And research initiatives will help WAGR individuals live healthier and happier lives!
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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.
The IWSA has been like a second family to us since the day my daughter was diagnosed. I will be forever grateful and proud to be a part of the IWSA.
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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!
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!!!
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.
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!!!
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
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.
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.
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.
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.
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.
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.
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!
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!!
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.
My daughter, Emilia, was diagnosed with Aniridia at 1 day old, 5 weeks later she was then diagnosed with WAGR syndrome. Myself and my husband felt incredibly lonely and lost at this time. We found the IWSA by searching WAGR syndrome in google and it was the best thing we could have stumbled across. We immediately became part of the Facebook group and were surrounded by information, support and positivity. Just in the first day of being part of this group we discovered 5 other families in the UK with the syndrome (after being told there were less than 450 diagnosed cases in the world I wasn’t expecting so many!) We became part of a new family and often share achievements and concerns. The support and information is invaluable. Having the IWSA is fantastic and I appreciate it more and more everyday.
They have been unbelievably helpful to me and my family. They are always there if we need them
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This is such a great organization. WAGR such a rear syndrom. Majority of doctors have no information on it. That's the only place you can find it. IWSA is your family, your doctor and your friend. Thank you for what you do.
When we first found out our daughter had WAGR, the first thing we did was start searching the internet. We found the IWSA and are so happy we did. They are a wonderful and supportive group and I don't know where we would be without their guidance.
Only a very small organisation but so well run, so helpful for the people/families living with WAGR Syndrome that would otherwise have very little help and information on the syndrome provided by their respective countries health service due to its rarity.
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.
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.
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.
I am continually amazed and inspired by how this group (association) has grown and expanded it's ability to help children with Wagr, and their families, to be informed, connected and stay strong together. God Bless you all. If you were looking for help a place to help your child and yourself not only live with, but thrive with this syndrome, you have come home. You will be welcomed and cared for here.
Amazing nonprofit that supports amazing families! I gladly fundraise and donate for the IWSA as I know the donations are being used in the most beneficial way for WAGR families.
With WAGR syndrome being so very rare, IWSA has allowed many families to share stories and ask questions that we may not have felt asking to just anybody. It has given me a shoulder to cry on and many laughs to lighten each day. They don't realize just how much they mean to all of us. Thank you from the bottom of my heart for educating and providing support to me and my family!
My 10yo daughter has WAGR syndrome and because she was diagnosed pre-natally I was fortunate to have had the support of the IWSA from day one. Being such a rare syndrome, I've found the knowledge of the board to be invaluable in raising my daughter, both in medical and emotional terms. I doubt anyone could understand this until they've walked in my shoes. Living in Australia we are somewhat isolated, this makes connecting with other families virtually impossible. The IWSA ensures all families are kept "in the loop" at all times regardless of distance, ethnical or language barriers. I find this very comforting as despite our kids all being alike, so too are they all very different, so I am able to connect, share and compare various traits with a multitude of children from around the world. At the age of two when my daughter was in hospital to undergo a partial nephrectomy to remove a tumour, she recieved an unexpected gift from the IWSA which was welcomed with joy at a time when we had little to smile about. To know others who "get it" are thinking of us is so profound. Our family and friends of course were thinking of us too, but I doubt they totally understood exactly how we were feeling. The IWSA did, and always will.
The IWSA was my life preserver when I was swimming in fear off what my son's future would be like. Their knowledge of this disorder was a huge help to not only my family, but our doctors too. We have met other parents who deal with what we do day to day and now they are part of our own "family". I would be lost without them!
I've been diagnosed with WAGR as a teen and with rare childhood cancer called Wilms Tumor shortly before my 20th birthday. Support I've gotten from IWSA is really great. I attended annual meeting called WAGR Weekend back in 2009 and it was the best time I've had in last 10 years or so. IWSA staff who are volunteers are very helpful and supportive. I love the biannual newsletter called WINGS and on-line community for families.
This group has been a wonderful resource when it came to knowing what to expect with my son who was diagnosed with WAGR syndrome at 2.5 months.
Until I connected with WAGR.org I had not spoken with or seen another child with WAGR Syndrome. I had sought information regarding the cluster of symptoms and characteristics my child had from the time he was born, from the field of medicine and behavioral health. When I found WAGR.org my son was 20 years old. I sat at the computer and wept.
The Wagr Syndrome Association was there when my granddaughter was born. The members have been lights in the darkness for my daughter and son-in-law as they navigate new territory. The medical research that the members of the group are participating in will lead to many new advancements in dealing with whilms tumor and obesity. The members always seem to be there for each other and being small in number they are big on support. It is difficult being a little known genetic disorder to get the same backing as the more well known deseases but the group perseveres and get itself out here when it counts. It's a dedicated, positive and hardworking group that deserves our support.
This organisation was very helpful when my son was diagnosed with WAGR last year. The people that run the association are very friendly and approachable and very willing to answer the questions we had, even the silly ones. It is great to know that this sort of support is here. Their website was very valuable in relation to knowing what having this syndrome meant as it is so rare.
The only constructive feedback I would have is it does say International but their fundraising campaigns etc are very much bases in the USA. I have found that there seems to be quite a few people with WAGR in Europe and further afield. Also it would be great if the website could be updated more or if more people could become involved in discussion threads etc on it as its always good to have people to talk to with the same experiences
Our general doctor was the one who found the IWSA for us. As first time parents we were scared enough, but when Evie was 3 days old we found out that our lives were about to take a dramatic turn by hearing that she had no irises in her eyes, that she could be at risk for Wilms Tumor and that we needed to have her tested for WAGR/11p Deletion Syndrome.
Thanks to the IWSA, a life that I thought woudl be full of fear and disaster has become one of challenge, joy, perseverance, searching, learning and celebrating. We in the IWSA have changed the acronym WAGR at times to mean Winning Attitudes, Great Rewards, or even What A Great Ride...because as loved ones, we can all see how special our kids are, and how amazing their lives can be...the celebrations far exceed the moments of mourning...
I am so thankful to have found a group that started only a decade or so ago, that was formed by a few moms who said, "There's more of us out there...let's find them"~and now links families across the world via the internet~we are one~we are few, but we are strong!