Save Benny and Josh

$1,247,220 of $1.5M goal

Raised by 7,831 people in 10 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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Today I turn 45. But August 14th has a new significance in my life as it was August 14th, 2017 that Jennie & I received the call that confirmed Benny's Canavans diagnosis and also confirmed that Josh had it as well (despite the 1 in 4 chance of either boy getting it). So today marks one year since we found out that our boys have a horrific genetic disease.

To say this has been a difficult year is obviously an understatement. The excruciating pain I've felt deep in my gut at times this past year is indescribable. The number of times I've cried this past year exceeds that of the previous 25+ years. How could this happen? Why did this happen? What did I do to deserve this? How could this happen to two innocent babies? What did they ever do to deserve this?

Compounding the pain are the challenges I've faced at work. I launched Taste Wine Co four months after Jennie & I were married in 2015. I felt so blessed on so many levels. To have come up with what I believed to be such a great idea. To work in an industry and with a product (wine) I love. To be able to come up with the resources to get the business started. This business would support my family and afford us a comfortable lifestyle. And then it happened...the business struggled. So of course I put in more hours, keeping me away from my precious boys and incredibly patient & supportive wife. I started bringing the stress of the unsuccessful business home with me. I hated myself for it. My responsibility as a man is to support my family. And I'm failing at that too.

So much pain. So much disappointment. So many failings. How could this be?

Fast forward a bit, and things are not quite that grim. Actually, they are pretty OK. Most days Jennie & I are happy. Sure we have stress, yes things are still very difficult, but we have gained perspective and believe we have so much to be happy & thankful for. Nearly 8,000 people have generously responded to our call for help & we've raised an incredible sum of money for a cure. The cure is in sight. People are praying for our boys. Beyond the financial generosity, people have stepped forward to help in so many ways. And maybe more important than anything, Jennie, my incredible Jennie has helped me stay positive. She has taught me how to live in the moment. How to enjoy the smiles of our boys. How to cherish the precious moments. Their giggles. Their affection. Even their endless drool and stinky poopy diapers.

I wanted to write an update from the heart. So many of you have asked how we are doing. We're doing OK. We have our moments, but we are honestly doing pretty well all things considered. I am scared of our future, but I am (as much as possible) enjoying our present. And our presents...these two delicious boys, Benny & Josh.

In terms of the cure and an update on where things stand, unfortunately we were informed two weeks ago of another delay. So at this point it appears our best case scenario for the treatment will occur in December, not in October as we had previously been told. But we did not let the previous delays get us down and we won't let this delay get us down. G-d is looking out for us & loves us. The treatment will happen and we'll go from there. Hopefully we'll have a storybook ending.

In the meantime, Jennie & I have decided that we want to do a better job of keeping people updated on how things are going - even the little things. So we'll be launching a blog, possibly at SaveBennyAndJosh.com (or with #SaveBennyAndJosh somehow in the URL). We hope the blog will provide us with a forum to write quick/short updates, post pictures & keep all of you who care about us & our boys updated more frequently. And we hope that a blog will help us get in touch with our feelings, and possibly propel us to whatever it is that we have to do next. Beyond curing our boys, Jennie & I know we now have a greater responsibility. We aren't yet sure exactly what form that will take, but we need to pay it forward. And we will.

From the bottom of my healing heart, I thank you all for your support and look forward to sharing happy moments and positive updates with you soon.

Gary, aka Papa
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When Josh was just two weeks old I woke up to the familiar chime of a voicemail on my phone. The latest neurologist, in the string of neurologists and specialists we had taken Benny to in the last 7 months had called back. No one could figure out what was causing Benny’s developmental delays that began when he was about 6 months old. He had plateaued in development and had stayed in his 6 month state, although he was now a robust 1 year old. He had never crawled, never rolled over, never made babbling sounds. I called the doctor back right away,
“The doctor’s not in today,” the receptionist told me, “He’s on vacation.”
I knew in that moment the news was going to be bad. No doctor calls at the crack of dawn when he’s on vacation. I explained that I was returning his call from earlier that morning. She reached him on his cellphone and connected me.
“Some of Benny’s lab work came back,” he paused, followed by a deep sigh. “I made an appointment for him with the geneticist for this afternoon. She’ll explain the results to you.”
Everything in me sank… but still I couldn’t even imagine the news that later came that day.
Benny had a fatal disease. FATAL. The word echoed in my mind. The geneticist kept talking but I wasn’t hearing her words. FATAL. My happy, gorgeous, perfect child. FATAL. The life expectancy between 3 and 10 years.
He was growing well, healthy, he never even had a cold, and his disease was FATAL. I held my nursing newborn in my arms. I had a strong urge to vomit, bile burned in my throat.
“Whats his name?” She looked apologetically toward 2 week old Josh.
“Josh.”
“How old is he?,”
“He just turned 2 weeks old,”
“I recommend we test him as well. There’s a one in four chance he has canavan’s disease too.”
She gently moved a box of tissues closer to us, and left the room with nurse.
Gary and I sat, tears streaming, our hearts broken, holding each other’s hands tight…. Holding our babies tight. The world went black.

Two weeks later, the results came back. Our two boys shared the same deadly mutation. This little perfect newborn that I had barely gotten to know was sentenced to the same fate. An early death. A slow degeneration of life. The loss of function of body and mind over time, as a toxic build up of the acid NAA builds up in the brain.
I completely shut down, and I shut him out. I cared for Josh, but kept my heart at a distance. How can I love someone that is just going to be taken away all too soon? My heart was already in pieces from learning that I would lose my Benny. I didn’t want to be heartbroken twice over. I nursed Josh, I changed him, I rocked him to sleep, but I didn’t dare love him. I didn’t want to even like him. It was far too painful. Week after week I went through the motions. He screamed for the first few months with the worst colic. He cried day and night for 3 months straight. It felt apropos, I wanted to scream and cry all day and night too. Life was cruel and mean and his screams sounded the way I felt.
Over time things got calmer. i had no more tears left and Josh too stopped crying all the time. I eventually pulled myself out of the deep depression I was in, and one day I found myself singing and smiling with him… I realized as much as I tried not to love him, it was too late. I had fallen completely in love with him… I didn’t want to. I wanted to save myself from the inevitable pain… but it couldn’t be helped. There we were, and I was indeed in love. I’m terrified of it, but then again, life is terrifying, our babies are fated to such uncertainty, I may as well have this incredible love for the journey. Its what keeps me going ….and his giggles, and cuddles, and his serious stares….
If you are lucky to enough to meet Josh in person, you’ll see he often looks as if he has the weight of the world on his shoulders. I believe he has an old soul, and the weight of the world truly is on his shoulders. My greatest hope is that this journey he is on cures the world of this ugly disease. No child should be able to count all their birthdays on just their fingers. No family should have to hear of their child’s inevitable death on the heels of their birth.
As much as I had wished to be spared loving him, I now can’t imagine life without him. without either of our beautiful boys. Please celebrate Josh’s very first birthday with us, and gift him with your love, prayers and donations to eradicate canavan’s disease.

Thank you for all your support thus far, we are so close to funding treatment!

Happy Birthday Josh, to many many more!
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Benny came into this world with a bang. It was a hot Thursday night and there was the smell of an impending summer rainstorm in the air. Gary and I were getting ready to leave for the hospital when the labor suddenly went from steadily moving along, to ready to go! I attempted to make it to our car where our bags had been packed but my body was not complying to standing up, let alone walking down the long flight of stairs from the front door of our Brooklyn row house to the street. I reluctantly agreed to have Gary call an ambulance. Despite the young EMT beside me insistently repeating “just hold it, we’re almost there!” (He couldn’t have been serious, could he?!) Benny wasn't waiting for anyone. The EMT’s called ahead to the hospital to make sure the doctors were ready to meet us in the parking lot. Gary sat calmly behind the stretcher the whole ride encouraging me softly and stroking my hair. I can’t remember anything he said, but I remember the calmness in his voice, that sent a calm over me despite sirens and the buzz of emergency vehicle speeding across town. Benny began to emerge en route, and as my waters had never broke, his little body was snuggly wrapped in the amniotic sack, his own protection from the chaos. The EMT’s were shocked, they had never seen a baby born “en caul”- in the sack. But I was excited! A baby being born en caul is rare. It happens only in about 1 in 80,000 births, and in many cultures, it is believed the baby will have good luck in its life. As we pulled into the parking lot and the doors to the ambulance swung open I could see that there were big bloated drops of water coming down in sheets. The summer storm was in full force. A team of doctors, nurses and medical staff came running from under the ER awning where they had been waiting, to the doors of our ambulance shouting directions, but the sound of the falling rain was louder. I always loved the rain, and I was happy for it to be the soundtrack to our special moment. Although, I can’t imagine any of the hospital staff was happy to be standing in it, waiting for Benny to finish being born. Benny was born right there in that parking lot. I held him close against me under a blanket as our stretcher was rushed through the storm into the hospital.
No matter how much you plan, or think you know, or imagine how things will be, bringing another human into this world will surprise you, challenge you, test your limits, and then push you past your limits. Whether it’s during the birth, or having unexpected challenges. It will take everything out of you, and then fill you with a love you never could have conceived.

Often in the mornings Gary and I will offer each other the option to be the one to get Benny from his crib. It is one of the coveted tasks in caring for him. Sometimes we go into his room together, savoring the moment he wakes up and sees you. Benny wakes up each morning with a huge smile, and a happy squeal to whoever greets him. When he's lifted from his bed, and you hold him, his whole body will mold against yours and he will give you more happy sounds. There is no better way to start your day, than with his pure and true joy.

Benny let us know from day one that he’d be leading a life different than most. His path is unique, and I don’t know what our tomorrows will look like, or what adventures he will take us on, but I’m here with him, enjoying every precious moment, lucky to be a part of this little persons very big life. My wish for you Benny, is to continue to bring your love, joy, and excitement to all those who have been blessed to be touched you, for many many more years to come. Happy 2nd Birthday my sweet boy.

~Benny’s Mom (Jennie)
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We have a job….We are on call 24 hours a day 7 days a week. We have no vacation time, no sick days, no holidays. we get no overtime pay, raises, or end of year bonuses. Our work requires us to be physically, psychologically, and emotionally invested, present, and grounded. We give up our bodies, our careers, our spontaneity, and alone time. Who would be crazy enough to sign up for this job? Moms… and I’m one of those crazy people. If 8 years ago, I had truly known what it meant to be in my shoes right now, I would have been terrified. There are so many moments I feel like throwing my hands in the air in despair and running away from all the challenges. There are so many decisions that need to be made, and I just have no clue what the right answer is. There are so many needs that need to be met, that mine come last, if they come at all….

I was recently asked what do I do for myself when I’m having a hard day and I need a pick-me-up. I almost rolled my eyes when I heard, “do for myself”. I know self care is important but its easier said than done. But I knew what was the exact pick-me-up that always worked, and that I always get to have time for. Its my boys! When I’m feeling overwhelmed, or down, or like giving up, all I need is to see Josh’s smile, or listen to Benny’s hearty laughter, or get a cuddle from Michael and my heart is so filled with joy and love. Its a joy and love I never could have imagined to have been blessed to have, everyday 24 hours a day, 7 days a week, a fulfillment that doesn’t take a vacation, or sick day. Its a bond that grows exponentially without limit. I’m so lucky to have been chosen to be their Mom. Thank you Michael, Benny and Josh for filling my life with love and light.

Of course I wouldn’t be functioning as a mom if it weren’t for the support from the Grandparents, Aunts, Uncles, friends, community members, volunteers, and complete strangers, that have sent their prayers, love, food, helping hands, time, donations, and hugs. I am forever grateful.

A few months ago I could have never imagined that we would have gotten so close to our goal… We’re almost there, and yet, due to unexpected costs, we need what we had first thought we’d need. 1.5 Million dollars to complete production and set up costs for Benny, Josh and a few other children to receive this life saving gene therapy. We are already set for production, and Benny is scheduled to be the first of the children to receive the gene therapy THIS OCTOBER! But we need to raise just a little more. Please help us get to our goal, and help save the lives of Benny, Josh, and children with Canavan’s disease.

Much Love,
Jennie
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$1,247,220 of $1.5M goal

Raised by 7,831 people in 10 months
Created November 25, 2017
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