We need your help to save our boys, Ben (17 months old) and Josh (4 months old) Landsman, who were recently diagnosed with a devastating, fatal disease called Canavan Disease.
Canavan Disease is a progressive brain disorder caused by a genetic mutation that affects little children. Children with Canavan Disease are unable to sit, stand, walk or talk. As degeneration progresses, many children will lose the ability to swallow, develop seizures, and become blind. While other 17 month olds are typically toddling around, beginning to speak, and some are even climbing, Benny cannot crawl, sit up on his own, roll over, hold his head up, or speak. Josh is starting to show signs of affliction with Canavan.
There is currently no cure for Canavan Disease and most afflicted children develop fatal complications by the time they’re 10 years old.
Waiting for everything you love to be taken away is not a life. So we researched and reached out to scientists, doctors, researchers, specialists, and families across the country and across the world and found out that more can be done!
* Experimental treatments in off-label uses for drugs can slow down the degeneration.
* Therapeutic equipment can change day-to-day living.
* Major breakthroughs in gene therapy are happening and can change the way the world views and treats neurological diseases.
As with any progressive disease, early intervention is critical. We’ve already seen some improvements in Benny since starting medication a few weeks ago and ramping up his daily schedule of therapies that include physical, occupational, feeding, and developmental therapies. We also found well-respected researchers who have developed a gene therapy customized to treat Canavan Disease. We are desperate to fast-track funding to bring this gene therapy out of the lab and into the hands of patients like Benny and Josh. We are hopeful that Benny and Josh will be among the first to benefit and we need your help to make it happen fast.
Our initial fundraising goal to help bring this treatment out of the lab and available for our boys to use is $600,000. We’ve been so moved and humbled by the outpouring of love and support from friends and family who have already contributed, but we are a long way from our goal and need your help. Please help by making a generous, tax-deductible donation to help save our boys’ lives. And regardless of how much you are able to contribute, you can have a huge impact by reaching out to your own friends, networks, and communities to get the word out that we need their help, too. We need to get Benny and Josh treatment before the progressive disease takes over.
Benny and Josh are eternally grateful for your support!