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June 16, 2011

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June 16, 2011

Because of Jacobs cures dedication to the fight against Canavan disease, there is hope. Hope that one day there will be a cure for this devastating illness that has claimed the life of my daughter, Amber, and threatens the lives of my other daughters, Ariel and Kaydi. There are no words that can adequately convey my gratitude to this organization, and to Jordana and Sarah, for their endeavors on behalf of my children and the other children out there who are struggling daily because of canavans. The research that Jacobs cure supports has made significant progress in the treatment of canavans with pharmacologic approaches. There are also promising treatments on the horizon involving gene therapy and stem cell transplantation.

The Great!

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

Ariel has been the youngest recipient of the gene therapy, undergoing the procedure at just 3 months old. This is something that insurance would not cover and that we certainly could not afford. And more recently, we were able to attend the first family conference hosted by Jacobs cure. It was truly amazing being able to meet other families and their beautiful children in a loving and caring environment so full of hope.

Ways to make it better...

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

Not change a thing. They are doing everything right and far exceeding my own expectations of what a charity embodies.

June 16, 2011

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June 16, 2011

To the board members of Jacob’s Cure, we, as parents, are grateful for your time, your talents, and your gifts. For your unselfish devotion to the work that has made Jacob’s Cure a force that has enabled treatments to be developed when there was none, to give hope where there was none, and help us move forward in life knowing we no longer walked alone.

Jordana, you have been a rock to parents who have received the devastating news that their child had limited time on this earth and have served as a constant reminder that we as parents will not succumb to such a prognosis. You have given Canavan families a hope and security of knowing there is someone fighting for our children. You are a true inspiration and a blessing. You have given our kids a voice… one that is being heard through your efforts and one that has created pathways that have created better lives for the children battling this disease today. It is such an honor to have someone as yourself that we as foundations can learn from, receive encouragement from and follow as an example of courage, a diligent servant to the children and families struck by this disease. In spite of your everyday battles that so many in this room understand, you push through and continue your focus on funding the cure for Canavan.

Sarah, you serve the families of Canavan children with such compassion and dedication. You have a gift of bringing our families together and creating a “home base” for us, where you nourish and support the friendships that grow from that base. .. Friendships that are beyond that casual contact or even the ones that are built on compatibility…. but friendships that are deep seeded on the unspoken. Through Jacob’s Cure, you have become a member and a treasure to our Canavan family. Please know that every canavan parent you touch has great gratitude for the many things you do.

The Great!

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

that my daughter was one of the children included in the last gene therapy trial helped funded by Jacob's Cure which has slowed the progression of the disease. I have always found the foundation to represent all the children battling this disease and works diligently to find funding to move the programs forward so that our children actually benefit from the research.

Ways to make it better...

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

find it hard. This organization serves as a model of what a charity is in every sense of the word. They have established goals and work hard toward meeting those goals in order that the children directly benefit. Jacob's Cure has supported families and programs and has funded life saving research to children.

June 29, 2010

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June 29, 2010

Jacob's Cure is a caring and selfless organization that is devoted to finding a cure for this horrific disease. The inspiration that Jordana and Jacob's Cure has, allows me to continue to have hope that one day, soon, a cure will exist and hopefully help my 11 year old daughter and every other child affected with Canavan Disease.

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The Great!

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

I have watched Jordana and Jacob's cure speak before congress requesting funding for this "Orphan Disease". Her delivery was eligant and diligent in pertraying the need for research funding. Jacob's cure has been so inspirational.

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What I've enjoyed the most about my experience with this nonprofit is...

Knowing that my family is not alone with suffering from this horrific disease and learning that Jacob's Cure is going above and beyond all possibilities to reach the goal of curing Canavan Disease.

The kinds of staff and volunteers that I met were...

Amazingly nice, courageous, caring and ambitious.

If this organization had 10 million bucks, it could...

Pay the researchers and lab expenses that is needed to cure Canavan Disease. It is so upsetting to know that money is the only road block in reaching this goal at this point. They are so close, but money is what is slowing them down.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

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