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September 19, 2013

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Review from Guidestar
September 19, 2013

The Canavan Research Foundation has been at the top of my charity list for over 15 years. My wife and I find their work relevant, important, and highly impactful. Unlike other research organizations that may take years to turn labwork into clinical trials, the CRF has been able to quickly translate research into practice, saving the lives of many children afflicted with the disease. We are proud to be able to help, and encourage all those who want to make an impact on the future of science and genetic disease to contribute.

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Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

October 19, 2012

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Review from Guidestar
October 19, 2012

I have over and over again been amazed by the work of the Canavan Research Foundation. They have created research on a disease where there was none, and furthermore, all of the children who were treated with the revolutionary gene therapy made history by their brains developing myelin. Furthermore, the leadership of the organization is compassionate, helpful, and truly passionate about finding a cure for this, and other degenerative brain diseases.

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How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

April 6, 2011

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April 6, 2011

When my daughter was diagnosed with Canavans Disease in 2004 we felt completely isolated and alone. It was wonderful to know that there are other families out the dealing with the same struggles that we are experiencing. I have asked all my friends to donate to canavan research foundation in honor of my birthday to help find a cure for this devastating disease so one day the family whos childs test comes back positive for Canavans disease does not get the same advice that we got...take her home love her prepare to say good bye because this is a death sentence... My hope is that one day they will instead hear " we can cure this "

The Great!

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

Gaining knowledge of current research

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

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June 14, 2010

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June 14, 2010

I'm more than pleased to spread the news. They help us with information and direction when we were seeking help for our grandson. When doctors failed to give us a diagnosis they gave us info to ask them and started testing as soon asp. The specialist was arogant and rude, he reminded us that we didn't have any medical degrees but the petiatrition listened. Unfortunately the test came back positive after Anthony surcomed to pnemonia. When the specialist was asked why Anthony wasn't tested sooner he replied " I was going to after I repeated the first tests (which were all negotive)". Anthony died at 3 yrs of age, how old did he have to be? The other test were all invasive and painful, thetest for canavans wasn't. When the organization is offering doctors credable information, why don'y they listen? During our quest we recieved great emotional back-up and direction. We spoke to others with children who had canavans and were very hopeful. I commend the foundation for all they do and tell everyone we meet about them. If I had a stick in my eye I wouldn't need a medical degree to know it hurts! When something is wrong and you don't know why it's good to have people that can answer Questions. Patricia Gray ( grandmother of the late Anthoy Gingera

The Great!

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

Hamilton Ontario

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2004

June 10, 2010

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June 10, 2010

I came into contact with Canavan Research Foundation in 2005 when my son Ben was 2 years old, at the age of 18 months he had been diagnosed with Canavan disease. To say that this diagnosis completly broke our hearts does not nearly cover the depth of emotion we feel but I know of no words that do. I live in the UK to my knowledge there are only 4 children with Canavan Disease in the country and at the time there were only 2. However in America and Jewish communities around the world it is much more common. Our doctors knew very little about the conditiion and we felt isolated and without advice and resources to help and understand our son. Finding the Canavan Research Foundation and being able to become a memeber of the parents forum we were being offered a life line, suddenly I was able to talk to other parents and the doctors at the foundation to give me advice and share experiences and support. It is so valualbe to us. One of the best examples of how imporant a link to this experience is to us is as follows, In 2006 Ben had been having seizures for a year, these are unique to Canavan Disease and not epliptic fits but are very frighting and serious for the child as it involves the child stopping their breathing and then having very poor breathing, in Ben's case for at least an hour then the complete cycle of the seizure lasting the rest of the day. I was able to ask other parents and a doctor of their experience via the Canavan Research Foundation forum. But our doctors would not give Ben medication for the seizures because they had never seen anything like it. I read on the Canavan Research Foundation forum about how the seizures in canavan children can increase and reach a point where without medication the child can not come out of the seizure. About 6 weeks later Ben had such a seizure, instead of loosing his breathing for about an hour 3 hours went by and Ben was turning blue,I called an ambulance. At the hospital they put him on oxoygen and lots of monitors but would not give him medication. It was midnight when we arrived at the hospital all of the next day Ben's seizure continued but the doctors would not give him medication, he was put in a high observation room with a nurse by him all the time, a difibulator was plugged in by his bed as his heart rate along with his breathing was very irratic spiking dangerously high. I told the doctors and nurses what I has read about other canavan sufferers needing medication for epilepsy althogh the seizure did not appear like a typical epileptic fit but they would not listen. Finally at 11pm on the second day when Ben's seizure had been going for 28 hours and I had not slept for over 40 I insisted that again that the nurse call the doctor. I could take it no more I broke down and pleeded with him, telling him that I had read about these symptoms, insisting he do something, finally I asked him are you going to try something or just watch my little boy die? He gave in and gave Ben a shot of lorazepam, instantly the seizure stopped. For the rest of a week Ben had to remain in hospital, the seizure had left him so physically weak that he could not even cough. He was more exhausted than I have ever seen a human being. I feel certain that he could not have taken much more of the seizure and would have died. Shortly afterwards Ben was given a daily preventative medication for his seizures and has not had to suffer like this again. I also feel certain that had I not had the knowledge passed onto me by other parents via the Canavan Research Foundation forum that I would not have had that information from any other source and therefore not the knowledge or confidence to stand up to the doctor. I feel sure that on providing me with the resources of their forum the Canavan Research Foundation saved my son's life and we are in their debt. I continue to check the forum regularly to share my experiences with and learn from other parents all over the world. In 2009 my husband volunteered to rebuild and maintain the Foundation's website, we were pleased to be able to do something in return. The Canavan Reserach Foundation to my knowledge is the only facility in the world dedicated to searching for a cure for canavan disease, their break throughs will also be of benefit to other better known diseases such as parkinsons and alzhimers. Parents and doctors all over the world are looking to them for the latest information and management of Canavan disease and they alone carry the hopes of children all over the world that soon a treatment will be found to combat this cruel disease.

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

As in my story above

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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