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