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17 Reviews
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June 30, 2011

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June 30, 2011

Jacobs Cure is an amazing organization. It is an incredible resource for families affected by Canavan Disease. It allow families, like ourselves, the opportunity to share and learn from each other. Because of Jordana's strength and tireless efforts, she has helped raise awareness and bring research to the forefront of Canavan Disease. Jordana is an inspiration to all and has provided hope for all Canavan familes.

The Great!

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

I have been able to meet other Canavan families and share our children's experiences.

Ways to make it better...

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

Wouldn't change anything. Jordana and Sarah are doing a wonderful job!

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 an organization that is not only dedicated to its cause but determined to find a cure and stop at nothing. I have known Jordana for many years and have traveled with her many times on behalf of Jacob's Cure and have seen her 'in action.' She is my inspiration and her team of volunteers and supporters couldn't be stronger.

The Great!

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

I have seen results in Jordana's son Jacob as he has exceeded his life expectancy thanks to the drive of Jordana's Organization.

Ways to make it better...

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

I'd make it a global organization as this is the one foundation that is 100% 'hands on' while keeping managing costs close to nothing while the proceeds go directly towards research. This team is outstanding.

More feedback...

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

working with extraordinary people and seeing results.

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

out of the ballpark.

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

find a cure for not only Canavan Disease but other diseases too.

Ways to make it better...

I was able to contribute more time!

In my opinion, the biggest challenges facing this organization are...

always that the clock is ticking for these children.

One thing I'd also say is that...

the founder, Jordana Holovach is my inspiration.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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.

Photos

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.

More feedback...

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

June 29, 2010

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June 29, 2010

From seeing Jacob's Cure start from the very beginning to what it is now, i have seen an empire grow. Jordana has shown to everyone what sacrifice is all about. She went out and educated the public about this rare disorder. Jordana's true compassion and willingness for her child makes her a role model for everyone.

The Great!

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

Yes!

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 29, 2010

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June 29, 2010

Jacob's Cure is very special to me. Not because I or a family member has Canavan disease but because Jordana Holovach has dedicated the last 15 years to saving her son's (and others like him) life and it is an honor to help her do it. The progress we have made is incredible and it's only because of the people involved.

The Great!

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

seeingthe progress Jacob has made and the support new diagnosed families receive.

More feedback...

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

Making a difference for the better

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

quality people

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

save lives

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 29, 2010

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June 29, 2010

I have had the privledge of working closely with Jordana Holovach as I cared for Jacob for over five years as his nurse. I watched Jacob's Cure from it's inception, take it's first baby steps. This organization has never been just about a Mother and her unending quest to save the life of her child, but about all the families having to face the realities of this disease. This extraordinary woman and this organization has helped so many by funding research and education so that families faced with this devastating diagnosis no longer have to face this alone.

The Great!

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

Many different fund raising events. Helped personally with a local high school raise money through basketball tournament all proceeds donated to Jacob's Cure.

More feedback...

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

Being personally touched by Jordana, Jacob and all who donate so much of their time.

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

extraordinarily dedicated to the cause of fund raising.

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

Continue to fund the enormous costs of continuing research.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

June 28, 2010

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June 28, 2010

I have someone close to me who has Canavan and have donated to this organization in hopes of helping to find a cure for this awful diesease.

The Great!

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

I have not personally experienced the results of this wonderful organization, but I know they are doing so much for my lovedone. They are very caring and helpful and are making this disease be known to the public!

Ways to make it better...

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

Nothing. Just to have them keep doing what they are doing!

More feedback...

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

knowing that there is hope.

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

kind, caring and devoted to the cause.

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

Save the lives of thousands of innocent children.

Ways to make it better...

none. it was great.

In my opinion, the biggest challenges facing this organization are...

the fact that the disease is not as well recognized. There are many hurdles to pass for gaining the broad support that is needed.

One thing I'd also say is that...

They are doing a wonderful job!

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2009

June 28, 2010

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June 28, 2010

I just want to say that as a mother I understand greatly what it is like to want to save your child from any ailment, to want to give them the opportunity to live and grow and experience everything that life has to offer them. That is why I support this charity and hope everyone will feel the same way.

The Great!

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

reading about it and learning by others who have dealt with them personally

More feedback...

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

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