Save Benny and Josh

$1,134,010 of $1.2M goal

Raised by 6,660 people in 4 months
Created November 25, 2017



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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My heart was ripped from my chest 6 months ago. On my 44th birthday Jennie called me at work (where I spend way too much time), and barely able to say the words, she told me..."both boys have it".

Since I was a teenager I've always loved kids. As a camp counselor, visiting friends in the maternity ward of hospitals, playing with nieces, nephews, friend's kids, etc. I dreamed of my own kids - the things we'd do and share. And then life happened. A broken heart, some missed opportunities, an amicable divorce...and there I was, 40 years old with no prospects for a wife and my chance at having kids dwindling.

The happy part of this story is Jennie. She came into my life when I least expected it. I wonder to this day how I got so lucky to find the love of my life at 40 years old and to have somehow convinced her that I'm the guy she should spend the rest of her life with. She inspires me and amazes me every day. She is pure. She is selfless. She is loving. She is warm, smart and wise way beyond her years. (She is also leading a fundraising Acro-yoga class for women this Thursday - some spots still available).

Fast forward to one month ago, about two months into our SaveBennyAndJosh campaign. So many people had done so much to get us close to our fundraising goal to help save Benny & Josh. But what had I done? Nothing. Sure I got in front of a camera & spoke from my heart. But how have I taken things into my hands and really done everything in MY POWER to change the story and save the lives of the boys I've been dreaming about for 20+ years? I hadn't. Asking for help is not something I am comfortable doing, so I focused on my job and let others take the lead to save my boys.

But then I got the wake up call - we received discouraging news. Getting the cure from the lab to patient use is going to take longer than we'd hoped and cost more than we initially believed.

I needed to do something and it was obvious what I had to do. I had to plan a wine event to raise the remaining funds that we need to cure Benny & Josh. There are many walk-around kosher wine tastings this time of year, each offering an array of wines to taste and foods to eat. But there are no formal, upscale, sit-down, educational wine events. Wine seminars are very popular in the non-kosher wine world, so why not offer one in the kosher wine world? I've written about, harvested, sold and marketed kosher wines. I've worked at wineries in Israel & Napa, sold Israeli wines in NYC and run the marketing department for the largest kosher importer/distributor in the world. Along the way I've led hundreds of tastings. I have to do this.

And my wine (and food) industry friends stepped up. Beautiful wines have been donated. Amazing food has been donated. The venues have been donated. The only major item that we have yet to find a donor for are the wine glasses.

So now I turn to you. You've already donated very generously. We've raised over $1 million. I know...it is amazing. The outpouring has been humbling and has given us hope. But we need one last push. And rather than putting my hand out, I'm offering something special to 200 people. All the wine knowledge I've gained in my 12+ years in the wine business I will share with you in one night. We'll taste 5 flights of wine, each consisting of 3 wines. These wines will be top of the line wines, some recent vintages and some from older vintages. We'll talk about the wines, answer questions and offer tips. I will remain a resource for future wine questions. And of course, anyone who attends this event (with all proceeds going to 501C3 Rechav Lev for #SaveBennyAndJosh) will be playing a role in helping save the lives of my boys, as well as others affected by this horrible disease.

March 3rd event at WSIS in NYC: https://savebennyandjoshwinenyc.eventbrite.com

March 10 event @ Kingsway in BK: https://savebennyandjoshwinebk.eventbrite.com

Please consider sharing these events with anyone you know who might enjoy this type of thing, want to attend a special event & who would feel good knowing they are helping to save 2 little boys while enjoying a very special wine evening.

With tremendous gratitude.
gary
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It was less than 8 weeks ago that we first reached out and asked for help. We were completely overwhelmed by the daunting amount of money needed to save Benny and Josh. We didn't know how we'd get there... YOU answered our call for help. YOU stood behind us and shared our cry for help and it reached thousands. We were told there was NOTHING we could do. YOU had HOPE! We are almost at our goal! The money we're raising is going directly to bring treatment out of the lab into patients hands. Patients like Benny and Josh...
We can't thank you enough for giving us strength when we felt depleted. For standing behind us, and giving us strength. For helping us get through the hard days, and for cheering us on through the good ones. Thank you for giving us HOPE.
Much Love,
Gary, Jennie, Michael, Benny and Josh
Hope to Save Benny and Josh!
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I found myself holding Josh's foot in my hand as he lay across my lap for a good while... taking in each dimple and wrinkle in his pudgy toes... and the intense reality that I was in love with this little guy hit me hard. It sounds strange, that I was surprised to find myself deeply in love with my child. Isn't the what we'd expect from a mother?
Six months ago, when Josh was just a newborn, we toted him along for his first big trip in the car to see a geneticist for his big brother Benny. Benny was still undiagnosed and we were going to see specialist after specialist to try and find an answer to the halt in his development. Never, not even in our worst nightmare, could we have anticipated the news we got that day. Our Benny had a fatal disease. The child we spent a year falling in love with, was dying... and the newborn in my arms had it too...
The heartbreak was too much to bear. In the days that followed, I felt completely lifeless. How could I go on living knowing my children would die a slow, drawn out death? How could I go on knowing that they'd slowly lose their capacity to move their bodies, to learn, see, swallow, and hear? I didn't want to "be" anymore. I went through the motions of caring for my newborn, but I kept my distance. I was terrified of falling in love. I was terrified of the imminent heartbreak. Until it hit me… I had so little time… If I go on like this, I will have nothing. No special moments. No memories. No love. My happy Benny didn’t know what was going to be. He was enjoying each day, laughing and smiling. I took my cue from him. I decided to live in the moment. It was too hard to think about tomorrow, so I didn’t. I’ve practiced meditation for many years, and this was my new meditation! I took control over my thoughts, and focused on the present. I focused on enjoying each moment. I’m banking my memories. They’re too precious to waste on feeling sorry for our situation.
I had fought so hard to close my heart those first few weeks, I had tried so hard not to fall in love… but it snuck up on me. My heart is full of so much love, and even more, of HOPE.
This month is Benny’s and Josh’s half Birthdays! Life since these boys has been a roller coaster of emotions. 6 months ago our family was broken and lost. Today we are making strides towards bringing treatment to Benny and Josh!
In just 6 weeks we’ve raised almost a Million Dollars! We’re so close to funding a treatment for Canavan's. All that's needed is funding to help bring the treatment for this fatal disease out of the lab and into patient use. Can you imagine, funding is all that's needed to save Benny and Josh?

Our goal is to reach 1.2 Million. We need 2000 people to donate $100 to give Benny and Josh a chance at life.

We have been so blessed by the love and support we’ve gotten from our family, our friends, community, from complete strangers across the country and across the world. We are forever grateful for all of you, and for giving us HOPE.

Much Love,
Jennie, Gary, big brother Michael, Benny and Josh.
Josh, Benny and big brother Michael
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We're in the thick of the Holiday season, and I've been holding on to every moment. We all like to capture family memories, but this year is very different than last. Last year, I was in blissful ignorance. We had no concerns, no worries about childhood death. Benny was experiencing his first holiday season, and I was glowing with excitement and disbelief by our new surprise pregnancy.
Now I live day to day, moment by moment. Living in the moment is a constant mental exercise. Not for the benefits of mindful meditation, but for survival. Anything beyond today is unknown. We don't have the benefit of having typical children with typical expectations. There's no security that what we have today, we will have tomorrow.
As we sit together as a family, lighting our Hanukkah menorah, my mind wanders, what will our family look like next year? What will our family look like in 10 years? I hug my babies tight, breathe in their scent, and beg my brain to go back to the moment we are in, the moment I know I have.
We have accomplished so much, in just a few weeks... and we still have so far to go. The money that has been raised so far is already being put to use. Members of the science community have been hired to work on Canvans disease, to help researchers fast track their work and get it ready for patients, for patients like our Benny and Josh.
I hope and pray that with your help, we can reach our goal, and help save Benny and Josh.

Happy Holidays from our family to yours.
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$1,134,010 of $1.2M goal

Raised by 6,660 people in 4 months
Created November 25, 2017
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