Jacob's Cure, Inc.

Rating: 4.94 stars   17 reviews

Issues:

Location: PO Box 52 Rye NY 10580 USA

Mission: Jacob’s Cure is a 501c3, non-profit foundation that was created in September 2000. Jordana Holovach is the Founder and Director of Jacob’s Cure. She created the foundation because of her passion to save the life of her son, Jacob, who is afflicted with Canavan disease, a fatal genetic brain disorder. The sole mission of Jacob’s Cure is to fund research in Canavan disease that aims to cure thousands of children dying of Canavan disease today. Jacob’s Cure allocates monies raised to research, this is made possible due to volunteer staff and minimal overhead. Areas of research include gene-therapy, stem cell transplantation, pharmacological approaches and basic science in understanding the pathways of the disease. Because Canavan is a rare disorder, federal funding is scarce. It is through the efforts of Jacob’s Cure and the philanthropy of others that enables Canavan research to continue and a cure for Canavan a hopeful reality.
Results: To date, Jacob’s Cure has funded two gene-therapy trials and is currently funding research towards a phase 1 stem-cell clinical trial aimed for 2011. Research efforts to date have slowed down and in some cases halted the progression of the disease in most of the children who received gene-therapy and have begun the recommended pharmacological regimen.
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EIN 13-4136564
9145024249
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Community Reviews

Role: Professional with expertise in this field
Rating: 5 stars  

4 people found this review helpful

As co-founder of the Dare To Hope Foundation, I am always looking for valuable & real information on rare diseases. Jacob's Cure is an amazing resource for families affected by Canavan's Disease, dedicated to awareness, research and support for those families.

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

its involvement with the Global Genes Project, bringing awareness for all rare diseases

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-6-01

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Rating: 5 stars  

7 people found this review helpful

Jacob is magical and Jordana his mother is a real go getter. Please watch the video and see how much progress has been made in the treatment of this brain disease through Jacob's cure and how this science can help other too. The quality of life of these children and their families is improving all the time. It still takes a tremendous amount of effort and money to keep moving forward. Please give generously to Jacob's Cure and know that not one cent of your money or time will go to waste. You can feel proud that you you are helping families and improving the future of health care for us all.

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

Seeing the progress of children with Canavan

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010-6-01

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Rating: 5 stars  

10 people found this review helpful

Jordana Holovach has dedicated her life to saving the life of her son Jacob and lives of millions of others. I have worked side by side with Jordana and other members of the organization and can tell you first hand how extraordinary this charity is. Jacob's Cure educates and funds research in very successful and unique ways. Whether through their last Gala event or advertisements on Taxi TV or through the Helen Ficalora "smile" charm or the annual Casino night/Bowling event, Jacob's Cure, is always looking for new ways to spread awareness and raise funds and make sure family and friends of Jacob's Cure have fun in the process.

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

This is an amazing organization.

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

There are no changes that could be made.

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

helping to save Jacob's life.

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

exceptional, extraordinary people with huge hearts.

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

continue to fund research for a cure.

Ways to make it better...

government funding was increased.

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

increased costs.

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

I can't imagine anyone meeting Jordana and Jacob and NOT wanting to help.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-3-01

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Rating: 5 stars  

10 people found this review helpful

Jacob's Cure, Inc. is an awesome nonprofit organization that helps children and families with Canavan's Disease. They have done wonders with gene therapy to help children live longer and have some quality of life for those who are afflicted with this devastating disease.

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

Learning what is now being done to advance the research and gene therapy for this disease.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-3-01

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Rating: 5 stars  

1 person found this review helpful

My son who is 3 years old now was diagnosed with Canavan at 5 months. Dr. Leone, who is the main researcher for Canavan Disease, gave me Jordana's information and referred me to Jacob's Cure site. It was just so great to get some sort of information and support about Canavan at the time when you are really lost and the doctors you see have absolutely no experience with this disease because it's so rare. Jacob's Cure Organization is the number one non-profit organization that has raised so much money for research through their hard work and dedication. Its the only thing that gives me HOPE that one day there will be a cure for Canavan Disease and my child will be able to walk and talk like a normal human being. Jordana and Jacob's Cure Organization are amazing for the work that they do to raise awareness and donations for this very rare and devastating disease.

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

getting support and information on Canavan Disease when no one else could offer any help.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-1-01

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Rating: 5 stars  

1 person found this review helpful

if it wasn't for Jordana and Jacob's cure we would of never known what to do when we found out our daughter Lilliana had canavan disease. i stumbled upon their website and contacted them to find out if they knew what i could do. Jordana emailed me within a few minutes of me clicking send and told me to contact the dr leone in New Jersey. we are very greatful for Jacobs cure. we wish we could only do more to help.

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

our daughter has canavan disease so all the wonderful work jacobs cure does benifits her.

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

their hard work and dedication

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

very kind

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

definitely save a lot of children

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2008-11-01

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Role: General Member of the Public
Rating: 5 stars  

9 people found this review helpful

The tireless effort of the founders do whatever is necessary to find a cure for this rare disease is amazing

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

Attending a function. Knowing the family involved and seeing what an impact this charity has on their lives

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2007-4-01

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