100% of all donations are tax deductible.
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 #1 fundraising goal is $1.2 million to help bring this treatment out of the lab and available for children like Benny and Josh who have Canavan Disease. When we launched the #SaveBennyAndJosh campaign 3 days before this update, we didn’t know if this number was achievable. We now believe it is. We’ve been amazed and shocked by how quickly our campaign is growing. We’ve also received tons of messages from you guys and want to let you know that your support, empathy, and encouragement has given us so much hope for a brighter future. Words simply fail to express how incredibly grateful we are.
In addition to all your amazing support through this GoFundMe page, people have learned about our story and reached out to the researchers to see what they can do to help. We do not yet have information to share about offline contributions since we launched this campaign, but as soon as we do, we will update you.
Finally, we received a bunch of notes and requests from people who want to know how they can help Benny and Josh more directly. Our #1 goal is to get the research funded. But to answer those who were asking, we have decided that if we are fortunate enough to help the researchers raise the $1.2 million they need for the patient gene therapy, donations in excess of what the researchers need will go to expenses related to Benny and Josh's care, medical needs, and special needs equipment.
We’ve been so moved and humbled by the outpouring of love and support. Please continue reaching out to your friends, networks, and communities to get the word out. Any showing of support -- whether financial or otherwise -- means the world to us.
Benny and Josh are eternally grateful for your support!
----------------------------------------------------Frequently Asked Questions
1) Does gene therapy for Canavan Disease help other, more common diseases?
Your support for gene therapy for Canavan Disease contributes to the science and development of gene therapies for other diseases of the brain, such as Multiple Sclerosis, Alzheimer’s Disease, Parkinson’s Disease and Amyotrophic Lateral Sclerosis.
2) Does gene therapy actually work?
If you think gene therapy is a far-out concept, you are wrong. GENE THERAPY IS HAPPENING NOW. On August 31, 2017, the FDA announced its approval of a gene therapy for acute lymphoblastic leukemia (ALL) -- the first gene therapy approved in the US. Progress is happening now!!! By supporting our fundraising efforts, you can help save our boys lives and be a part of the future of medicine.
3) Is my donation tax-deductible?
Yes! all donations made on this page are tax deductible.
4) My employer matches donations. Does it work on this platform?
Check with your employer benefits representative to confirm eligibility for your specific employer matching offering.
5) Your campaign story says you need $1.2 million but the video says $1.5 million. Which number is it?
At the time we filmed the video, we had been in touch with researchers and discussed a general amount that it would cost approximately $1.5 million to bring the gene therapy research out of the lab and into a small group of patients' hands. Since those initial early discussions and before launching our campaign, we received an itemized budget from the researchers which provided the more specific $1.2 million amount. We are asking for the lower number because our #1 goal of this campaign is to get the money needed to bring the gene therapy into patient use.