INTERNATIONAL WAGR SYNDROME ASSOCIATION

Rating: 5 stars   10 reviews

Issues: Health, Cancer

Location: PO Box 392 Allen Park MI 48101 USA

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.

2011 Top-Rated Nonprofit
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Community Reviews

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Rating: 5 stars  

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.

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I've personally experienced the results of this organization in...

Information recieved (research, educational, therapuetic, health, behavioural issues, low-vision related), worries and concerns shared and alleviated, gift recieved, financial assistance offered should I require for travel to meet other families at the WAGR weekend, shoulder to cry on, ear to vent to, non judgemental advice and support.

If I had to make changes to this organization, I would...

I am not aware of any changes which would benefit this organisation.

Rating: 5 stars  

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!

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I've personally experienced the results of this organization in...

The IWSA has helped me know what tests my son needs to help him live a full life. They have kept me informed of what medical issues to look out for so we can catch them early and improve his health. Their list-serve has been a true blessing as it has helped me connect with other families who are dealing with the same issues we are.

If I had to make changes to this organization, I would...

None

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

Volunteering for the IWSA has given me more compassion for families dealing with medical issues.

Rating: 5 stars  

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.

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I've personally experienced the results of this organization in...

Medical issues, advise, a friendly warm and caring group, willing to comfort, offer a shoulder to cry on, given me strength to carry on. Made me laugh with their humour. Helped me manage my daughter's behaviour issues and medical issues. They made me feel human again, and not alone and the only person going through this.

If I had to make changes to this organization, I would...

None

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

Extremely helpful, friendly, warm and caring, professional in their advise and helpful information to give my child a longer life expectancy.

What, if any, change in your life has this group encouraged?

Lifesaving medical issues to be checked for my child by doctors. Ifeel they are my second family.

When was your last experience with this nonprofit?

2011

Rating: 5 stars  

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.

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I've personally experienced the results of this organization in...

support I get when having health issues

If I had to make changes to this organization, I would...

try to get awareness all over the world by involving members in countries outside the USA and ask/order them to do something for IWSA in their community

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

IWSA webpage

When was your last experience with this nonprofit?

2011

Rating: 5 stars  

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.

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I've personally experienced the results of this organization in...

This group has done a lot in terms of advocacy for the children.

If I had to make changes to this organization, I would...

none

Rating: 5 stars  

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.

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I've personally experienced the results of this organization in...

I know the behavioral and medical issues our children face, what to expect, what to share with the medical community regarding my child's challenges, and my family and I have a host of support for our family and our son.

If I had to make changes to this organization, I would...

I would not. The people involved with WAGR.org are knowledgeable, compassionate, and available for families. They are an informed and powerful resource for families of children with WAGR syndrome.

Rating: 5 stars  

I don't know what I would do without the IWSA. I have learned more about my child by talking and sharing with parents, than I could ever learn from a textbook. We would have NEVER learned about the NIH study without the support of the IWSA. This is a group that I will be forever connected to!

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I've personally experienced the results of this organization in...

Better healthcare, better services at school, access to professionals, knowledge, power, and understanding

If I had to make changes to this organization, I would...

encourage more parents to get involved in helping the organization on a day to day basis.

Rating: 5 stars  

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.

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I've personally experienced the results of this organization in...

My granddaughters health

If I had to make changes to this organization, I would...

none

Rating: 5 stars  

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

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I've personally experienced the results of this organization in...

Our knowledge around the syndrome and the associates I have built up as a direct result of this organisation.

If I had to make changes to this organization, I would...

As above, I would Widen the basis of their fundraising etc and try to use the website more as I am very far away from the base and this is the best way of communication for me

Rating: 5 stars  

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!

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I've personally experienced the results of this organization in...

Better treatments for my daughter Stronger arguments to present information to social workers, teachers, school psychologists and doctors A scholarship to a WAGR Weekend one year The ability to utilize my strengths and weakness and benefit my daughter

If I had to make changes to this organization, I would...

Somehow build an island so we could always be together! After a WAGR Weekend with all the families...gosh, words just can't explain how nice it is to spend time together, supporting one "in person" rather than as we normally have to over the internet.

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