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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

18 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.

1

Volunteer

Rating: 4

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Volunteer

Rating: 5

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.

1

Client Served

Rating: 5

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.

5

Volunteer

Rating: 5

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.

5

Board Member

Rating: 5

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.

10

Volunteer

Rating: 5

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.

4

Donor

Rating: 5

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.