Our plea for help...(you can view this & our other videos on our YouTube page HERE.)
We're experiencing unprecedented times & despite it all YOU came through! In the past two weeks over 7,000 new donors worldwide stepped up and donated generously. We needed $650k to make the May 31st payment deadline of the drug manufacturing company. Over $550K has been raised and we have pledges for another $100K. These donations have allowed us to make the payment and gets us to the next step, the long awaited treatment. Thank you, thank you!
And now the final stage...the hospitalization costs for the children to participate in the trial.
Each child will require approximately three weeks in the hospital for the surgery to deliver the gene therapy (not covered by insurance companies). This consists of one week prior to the operation for monitoring, testing, and MRI’s. Then about two weeks after the surgery in the ICU, with follow-ups over the subsequent weeks and months to monitor the effects. The estimated cost per child is $280K. We now need to come up with the final $560K to help #SaveBennyAndJosh.
This journey has lasted over 2.5 years and it comes down to this. Over $5 Million raised & spent on research, testing, FDA filings, consultants and the production of the drug. There is a bright light at the end of this long and difficult journey. Benny and Josh making medical history, their treatment may not only cure children of Canavan disease, but it can lead to a cure for Multiple Sclerosis, ALS or even Alzheimer's disease. Imagine being a part of saving not just our two precious souls, but millions of people. Please donate generously....
Yours, most gratefully...
Jennie, Gary, Michael, Benny, Josh & Evan.
Benny and Josh over the years.