Save Benny and Josh

$1,376,300 of $2.5M goal

Raised by 9,203 people in 20 months
Created November 25, 2017
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UPDATE! 100% of all donations are tax deductible. 
This applies to all donations made since this page was first posted. 

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!


Benny - 17 months old


Josh - 4 months old



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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. If you made a donation over $250 you will recieve a reciept via email. For any donations below $249, your credit card records are sufficient. 


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.
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Last year Benny and Josh's birthday came and went. It was too hard for us to celebrate. It was a reminder that our boys are getting older. With a fatal disease, that means one year closer to my greatest fear.

Benny turned 3 on June 27th and today, July 16th is Josh's 2nd birthday. This year we celebrated. We celebrate, even with the looming deadline of $2.5 million dollars needed just for the vector production for the gene therapy Benny and Josh so desperately need. It needs to be paid by this September so that we don’t face any more delays.

Gary and I are committed to making sure we are not just surviving each day, but that we are living life each day. So this past Sunday we invited close family to our home and had a double birthday party, with cake, and presents. That evening, Gary turned to me, (surprised), and said "at some point I realized I was actually enjoying it all and not depressed like last year". So it seems to have been a success... we are coping. But of course we wish we didn't have to cope.

Benny has grown to be an incredible little person. He loves elephants and bumble bee noises. He loves music and spinning in circles. He loves to scare people with a "Boo!" He has the biggest, deepest belly laugh that infects everyone with a smile. He is a beautiful boy. When he was an infant I used to gaze at his deep grayish, blueish, greenish eyes and imagine the girls that would fall for him one day. He has the sweetest disposition and is a caring big brother. He will pat his baby brother on the back to help burp him. If you give him a kiss, he waits for your cheek so he can give a kiss back to you. He is forever a little cuddlebug and loves to be held and snuggled. I am loving each and every moment I have with him.

Josh had a whole different persona from day one. He is stubborn and forthright. He is so determined to always be doing more. He will try and try again despite having little control over his movements, he can roll over, hold his head up, and stand up (with support). He loves music and will sway to the beat that he hears. He loves blueberries, and almost all foods - he loves to eat and eat! He will grab and hold on tight to whatever he sees. He will let you know when he's happy with loud joyful squeals, and he'll let you know when he's mad, with strong angry sounds. He loves his biggest brother Michael, and when Michael is around Josh will follow (with his eyes) wherever Michael goes and call out to him. Josh is our fun party guy.

Each moment with our boys is precious. I appreciate every minute I have with them. Some days it’s easy. They are filled with smiles, and giggles, and cuddles and I never want them to end. Some days are so hard... filled with ambulances, and hospitals, and pain I can’t do anything to help, and I when I’m about to wish that this day would pass, I have to stop myself because I don't know if it will be the last. Some days I don’t know how I will find the strength to carry on, and others I wish wouldn't end. Through the ups and downs, I want it all. To feel their soft skin. To see their beautiful eyes. To hold them close, to feel them in my arms.

It’s so strange to be in a state of unknowing. We all live with certain expectations of life. With Canavan disease, those expectations are all taken away. I don’t know what each day will bring. But I do know that I cherish each one.

Life with Benny and Josh makes me dig deeper than I thought I could To find the strength to be there for it all, to be present, to take it all in, and to fight for them.

For almost 2 years, We’ve been fighting for a cure for canavan disease. We’ve raised over a million dollars, funded research teams and brought Benny and Josh to Washington, DC to the FDA headquarters to fight for their approval of this gene therapy treatment. We’ve met other families that need a cure too. We’ve banded together to raise money, awareness and to get a cure. We started the Cure Canavan Fund charity to make sure that not just Benny and Josh get treated, but that all children fighting Canavan disease can have access to treatment too. I don’t want to cry anymore, or for birthdays to mean we are closer to the end. I want to cry in joy that we are defying the odds and celebrating many birthdays together. Getting treatment will mean that Benny and Josh can get better each year, not just survive another one. We’ve used almost all of our funds getting the gene therapy to where it needs to be so that the FDA will approve it. We are at the final steps. We are in production! This month we spent $641,000 on one step of production, This coming September we will need $2.5 million for the final vector manufacturing that will start this September. This means that the drug can be ready for early 2020. We have waited so long for this, and we are close.

Please consider giving Benny and Josh a special birthday gift - the gift of life. Help them get the treatment and celebrate many more birthdays.

for more info on the Cure Canavan Fund visit
www.curecanavanfund.org
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On Monday May 20th we welcomed baby boy Landsman to the world - at home - our second home birth. Eight days later, we held the bris (circumcision) at our Synagogue in Brooklyn and we named him Evan Gabriel.

Some people have asked (& I’m sure many have wondered), does Evan have Canavan disease? In utero testing revealed that he is a carrier (much as Jennie & I are carriers), but he does not have the disease.

Evan is now two weeks old. Josh was two weeks old when we first learned that the geneticists believed Benny had Canavan Disease and that two week old Josh had a 25% chance of having the disease as well. Sure enough the diagnosis was confirmed for both Benny and Josh two weeks later.

Since announcing Jennie's pregnancy about 6 months ago, people have told us how happy they are for us. It is very sweet of course & I do believe that people are especially happy for us. But it also does feel a bit weird. I’ve struggled to reconcile my feelings about a potentially healthy baby. I’ve learned that health is not a given. I’ve become a part of the special needs world where I see so many families who’ve been completely blindsided… and I ask myself, will I love him in much the same way I love Benny & Josh? Will I favor him since he is “healthy” (free of Canavan disease)? Will he get less of my attention since Benny & Josh require so much more?

When we received the Canavan diagnosis for Benny & Josh I already loved Benny very much, but I didn’t really "know" Josh and I hadn’t fallen in love with him yet. Learning in 2017 that this new baby had a fatal disease was obviously painful beyond description. But I could protect myself - I could prevent myself from falling in love with him.

Fast forward to today, and despite my best efforts to protect my heart, I’m madly in love with Josh. He & I have a special Friday night custom to go to Synagogue together. I wear him in a carrier during the service and hold him close. I love our special time together. Like most of us, I sometimes come home from work tense, stressed & in a sour mood. One smile from Josh or Benny and it all seems to be washed away.

I'm nearly 46 years old and there is a part of me that wonders if Evan, without physical limitations, will be the son that I dreamed about for so many years. Will I have that special father-son baseball catch with Evan? Will he be the son I teach to ride a bike? Will I talk to Evan about girls, take him to a concert and teach him how to fish? What will this new relationship with a “normal” kid be like? My relationships with my special sons, Benny & Josh are nothing I could have expected. The boys continue to surprise me, and bring me tremendous joy & pleasure in ways I’ve never dreamed of. I love Benny & Josh more than I can describe. But our relationship is not one that can be described as conventional. Might I have that more conventional father-son relationship with Evan?

Our optimism that we will find a cure for Benny & Josh continues to grow and the positive development with the FDA last month further fuels our optimism. Admittedly though, I remain guarded. Much like delays for a business startup, this (experimental procedure) “startup” has endured many delays which have unfortunately translated into increased costs. We will not let these delays deter us. We will continue to do everything in our power to #SaveBennyAndJosh.

The public attention we’ve gotten has led to our meeting other families in the Canavan world. And in recent weeks and months, together with our “team”, we’ve bound together with five other families with Canavan kids with whom we’ll share these seemingly ever-increasing costs. But we will need to raise more money & continue to do everything in our power to overcome any obstacle that gets in our way. We MUST #SaveBennyAndJosh.

As always, we are grateful beyond words for your support & for being a part of saving the lives of our sons, Benny & Josh.

Yours most appreciatively & sincerely.

Gary, Jennie, Big brothers Michael, Benny, Josh, and baby Evan.
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I’ve been burdened with what feels like big news, for the past couple of weeks, but I haven’t known how to share my mixed feelings. On April 22nd we had a productive meeting with the review board from CBER (The Center for Biologics Evaluation and Research) at the FDA. I was extremely anxious leading up to the meeting. We’ve been working on a gene therapy trial since we found out in late 2017 that it was the only real option to treat canavan disease. Now a year and a half later (much longer than I thought any of this would take) we got to speak directly to the people who determine whether or not our trial will move forward. There were over 20 participants sitting at the oval conference table including Benny & Josh (now nearly 3 & 2 respectively), as we discussed the details and technicalities of working on an experimental trial. Benny and Josh’s presence was critical in underscoring the importance of expediting the process and generating what we now feel is a collaboration. It was incredibly intense and humbling to be at a discussion that can change the course of children’s lives. I don’t think it's presumptuous to say that it was meaningful for the members of the review board as well. It’s highly unusual for the patients awaiting treatment to meet the doctors and scientists reviewing submissions for experimental treatments, let alone two toddlers. The FDA officials seemed to connect with the boys seeing them there in person.

The result of the meeting is that we now have a clearer understanding of what is needed to move forward, to treat our children and a handful of others. The FDA members basically let us know what we need to provide them in order to be given the green light to proceed, and removed what was previously a hurdle. But, to produce the final treatment we’ll need to raise another 2.5 million dollars. This will cover the growing list of expenses including FDA consultants, lab fees, vector and plasmid production, animal safety testing and extra time in the lab. We expect to begin treatments in early 2020. We are incredibly grateful for the support of the FDA and their willingness to work directly with us..

One of the members of the review board walked alongside me as I made my way to the elevator after the meeting. She told me she was a mother of a child born with a serious birth defect. She said that although it wasn’t life threatening, she understood what it felt like to want to do everything you can for your child and would personally help things move along smoothly. Her words were a great comfort. I know that she understood that desire completely, as I know every other mother does.

I left feeling hopeful and elated, but also heavy with the long road ahead. Much still needs to be done. I am somewhat relieved and excited at the prospect that we are that much closer, but I still carry the disappointment that we are still here, still struggling, still fighting to get this done. I wish my boys had had their treatment yesterday...


This past february I closed down the martial arts and yoga studio that I’ve been running for the past 8 years to dedicate myself to my family. Putting my dream job aside was an easy choice, as I focus on my new job to fund a cure for Canavan’s disease. I began the steps needed to open the “Cure Canavan Fund”, a 501c. It will be up and running at full capacity soon. So as a family, we’ve made it our mission to change the future. No mother should ever have to hear the news that their beloved child has a fatal disease with no known treatment. I hope that the work we are now doing will prevent mothers from having to go through what we’re going through now.

Thank you to all the loved ones, the friends, the friend’s of friends, and the many strangers I will only know through the kind words, prayers and support, as we try to save our Benny and Josh.

Sending love, and warm wishes for a very Happy Mother’s Day to you & yours.


.
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This letter was written from the heart. Anyone who is a parent would probably agree that we would take our children’s pain from them if we could. Many people who suffer losses were powerless to prevent the loss. In our case we are lucky as there IS something that we can do. So we maintain hope.

But last week we learned that our request to the FDA for "expanded access" for this life-saving treatment has been delayed. Which means we lose precious (& critical) time and must now find even more funding to save our boys. I am writing to urge the FDA to reconsider their position and expedite the approval. From the bottom of my heart, please help us get our boys this treatment asap.



My open letter to the FDA...

I love my boys. Benny & Josh are sweet kids that did not ask to be born with this horrible disease. But they are making the best of it. They smile a lot. They laugh a good amount. And sure, they cry a lot and don't sleep very well at night. But I love them more than I ever thought it was possible to love someone.

Speaking of love, I love my wife. Jennie is the warmest, most selfless person I've ever met. She is a giver through & through. I bet she would love to cook you a gourmet meal and have you over at our house.

But I'm writing today to tell you a bit more about my life. You see, since we got the diagnosis on the boys things have been heavy. What I mean by heavy is things are intense. To become a first time father at 43 years old, only to be told at 44 that your one year old and newborn will die during their childhoods, well, that is heavy.

I've always wanted kids. As a sports lover, I've always wanted sons to share that love of sports with. I've dreamed of playing catch with my boys, looking at old baseball cards together, shooting hoops in the driveway, watching the game, stuff like that... But on August 14, 2017 we were told that our boys would never walk, stand or talk. We were told that when this disease starts to take hold of them between 3 and 6 months they will begin to deteriorate. The best we can hope for our kids is that don't suffer too much as they slowly lose their basic abilities to function. Basically, we were told “ We’re sorry there’s nothing that can be done.”

Through Jennie's tireless efforts, we learned of a doctor. A selfless woman who has dedicated her life to finding a cure for this horrific disease. We immediately asked to meet her and she graciously agreed. She wants to help. WOW. But to fund this trial we’ll need to raise a lot of money - like $1+ Million dollars a lot.

Undaunted Jennie undertook the initiative (with the help of family) to raise the necessary funds. As life has it, expenses began to escalate and $1M became $1.2, then $1.5M and now we've been informed with new testing the FDA is insisting upon, the costs to pay for that testing will increase our total expenses to close to $2.5M.

Last week, Thanksgiving day was the one year anniversary of the launch of our fundraising campaign.

So it has been a year since we decided not to accept the fate we were told to accept, that the boys would lead sad & difficult lives until they pass. I mentioned earlier how heavy the year has been. Some examples of the heaviness of the past year...

I tried not to fall in love with my second son Josh but I failed.
I leave for work most mornings to the sounds of whimpering - either Benny or Josh (sometimes both of them) getting painful therapy when all they want is to be held.
Messages sent to me by friends often begin with the words "how are you holding up?".
My home is littered with special need devices and has therapists coming in & out all day & on weekends.
I watch other kids learn to speak while I pine for the simple word "pappa" to emerge from my boy's mouth.
I have learned how to grind up food and stick it into my kids' mouths so they will not be malnourished.
Rather than thinking about a college fund I ask family to help us save for a special needs trust.
My wife & I regularly carry a very heavy stroller for special needs kids up & down the stairs to our home, often to the looks of "poor them" from people who see us.
I have to carry my 1 & 2 year old sons around, while watching other father's hold their kids' hands.
I no longer know what "normal" is, and assume the rest of my life will be spent caring for my two severely disabled boys.

Getting back to this open letter to the folks at the FDA, last week we spoke with Dr Leone as well as the surgeon who has agreed to perform the procedure. The purpose of the call was for them to fill us in on how things went with their meeting with the FDA following the second request to allow us to perform the experimental surgery on our boys.

We were told that we would need to raise several hundred thousand more dollars to comply with the additional testing the FDA was demanding. We were told that we should be happy that the FDA is working with us, but that they were acting as if we were a billion dollar drug company. And yet again, we were told that this would cause a delay and the best we could hope for now for the treatment would be Spring 2019.

Please understand. We do not want to have to do this surgery. We do not want to fly away from home with one boy while leaving the other at home. We do not want to watch one son at a time be sedated and then have holes drilled into his skull straight to his brain. We do not want an experimental medication to then be injected into his brain. And we do not want to wait several months to see if things are working. But if these were your boys, wouldn't you do all that? Wouldn't you do everything in your power to keep your boys alive? Wouldn't you do anything you could to improve the quality of life of your boys? Knowing that your kids were deteriorating each day, wouldn’t you push to have this invasive procedure done as soon as possible? I bet you would.

So please, I beg you from Benny & Josh. I beg you from Jennie. I beg you from the 8000+ people who have donated. I beg you from the other parents of kids with Canavan's disease. I beg you from the bottom of my shattered heart, please approve this treatment for my boys and please do it quickly. Please do not ask for more data, or studies to be done. The boys continue to lose motor function and we know there is a chance that while we can stop the adverse effects from continuing to take place, that the boys may never be able to recover lost abilities. So the longer you take to grant the approval the worse shape the boys will be in & the more difficult it will be for them to ever fully recover. We understand the risks and simply do not see any other options. We want to cure our boys, we want to cure this disease and we want to do it now. Please grant us that...

Most sincerely yours.
Gary Landsman, father of Benny & Josh.


To those of you not working at the FDA, please feel free to reach out to us if you feel you can help. And PLEASE help us reach our new increased financial needs to get this procedure done for Benny & Josh. We thank you in advance with all our hearts.
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$1,376,300 of $2.5M goal

Raised by 9,203 people in 20 months
Created November 25, 2017
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