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June 29, 2011

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June 29, 2011

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 Great!

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.

Ways to make it better...

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

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

June 28, 2011

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June 28, 2011

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.

The Great!

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.

Ways to make it better...

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

None

More feedback...

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

June 28, 2011

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June 28, 2011

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.

The Great!

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

support I get when having health issues

Ways to make it better...

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

More feedback...

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

June 28, 2011

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June 28, 2011

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.

The Great!

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

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

Ways to make it better...

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

none

June 13, 2011

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June 13, 2011

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 Great!

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.

Ways to make it better...

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.

June 8, 2011

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June 8, 2011

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

The Great!

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.

Ways to make it better...

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

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