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Review for Jacob's Cure, Inc., Rye, NY, USA

Rating: 5 stars  

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.

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.

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.

Role:  Client Served & Because of the inspiration of Jacob's Cure, I founded a charity in SC to join in the fight to fund the research programs that have proven beneficial to the children.