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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Health, Medical Research, Pediatrics Research

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.

Programs: University of medicine & dentristry of new jersey $49,500 umass medical school $100,000 heartbeat lifesharing $250

Community Stories

6 Stories from Volunteers, Donors & Supporters

1

General Member of the Public

Rating: 5

How very ironic that I received this yesterday and then found out later in the day that Jacob had passed away. :-(!! Funeral is Thursday. Do sorry for this wonderful family and sending lots of prayers their way!!

Previous Stories
1

General Member of the Public

Rating: 5

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.

5

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

9

General Member of the Public

Rating: 5

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