The race against my daughter’s tumors

(translated from the original article in Hebrew in IsraelHayom newspaper Article  July 2019)

The Race Against Tumors // Hagit Ron Rabinovich

The story of Gil Atlan, Vice President of NF2 BioSolutions.

Karen looks like a normal 12-year-old girl who loves spending time with her friends, dancing to hip-hop music and riding horses while being a good student. However, her appearance does not betray the fact that she is sick with NF2, or that she had a complicated and dangerous eight-hour operation on her brain to remove a tumor that threatened to damage her facial nerve, hearing and balance. 
Karen is the third daughter of 46-year-old Sarit Atlan and her 45-year-old husband Gil , and they have three other children – Sharon (16), Daniel (14) and Shirley (9) – who are all used to the fact that Dad is often away from home due to Karen’s medical affairs. They know he’s doing everything to help their sister recover from her rare illness.
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Gil Atlan with his daughter Karen. “We expect a long way to go, but this is the perfect start” // Photo: Efrat Eshel
Gil’s French accent immediately betrays his origin as he was born in Paris to a psychiatrist father and a gynecologist mother. His encounter with Israel during a bar mitzvah trip brought him to Israel at age 19, and he studied mechanical engineering at Ben-Gurion University, which is where he met Sarit who was studying the Hebrew language, education and business administration. His work with the software company SAP required the family to relocate to the US, which is where Karen and Shirley were born. However, they decided to return to Israel three years ago for the girls to grow up in the country – and this is where Karen’s NF2 was detected.
“When Karen was born, we noticed she had two bumps on her skin,” Gil recalls. “We saw a doctor who suspected she had NF1, a disease whose expression in some patients is not that extreme. We were calm and confident that it would not be significant for her either, because she developed very well”.
“When she was five, she was diagnosed with cataracts and then and sent for an MRI. Even then, we weren’t really worried, but the test revealed two benign tumors on the auditory, facial and balance nerves, invisible internal tumors. This test confirmed that she has Neurofibromatosis Type 2 (NF2), a completely different disease from NF1.
“From that moment, I decided to take charge and try to find a treatment. I traveled all over the United States to meet experts and understand  the disease, and I found that everyone is talking about drugs that provide a temporary solution or surgery that can cause harm. Nobody talked about a long-term solution. “
For the next few years, Gil devoted himself to the study of his daughter’s illness, well aware that it could cause Karen to rapidly deteriorate and become disabled, as is the case with many NF2 patients.
His search through Facebook ultimately led him to meet with a physician in Pennsylvania named Nicole Henwood, whose son was diagnosed with the same disease. Gil ultimately joined her in her idea to found “NF2 BioSolutions”, a non-profit that aims to find a cure though novel therapies like gene therapy since NF2 is caused by a mutated gene.
In no time, Gil found himself “working a lot on developing the network needed to grow the non-profit”.  He sat in front of the laptop wherever possible during the day and especially at night due to the time difference with the US, utilizing his expertise as a high-tech innovation professional and using technology tools to reach parents from all over the world.
In just a few months, he set up an active network for the nonprofit, developing a dedicated Facebook page and a world-wide program of more than 37 “disease ambassadors” that included sick children and their parents in more than 11 countries. During their birthdays, parents/patients/families seek donations for the association and initiate events to increase awareness about the disease.
On Karen’s surgery day in September 2018, Gil shared the news with extended family and friends, requesting donations to the nonprofit for the first time. This led to $14,000 being raised in a few days.
“I realized that if another hundred families from around the world succeed in raising such a sum – we have $ 1 million a year and 5 million in five years,” he explained enthusiastically, presenting the website donation page he has set up. “
That’s exactly the amount we need to support labs to run the important stage called a ‘preclinical study’ – that is, testing in vitro or drug tests using animals. Then if an invention is funded, we can move to human trial phases by convincing biotech labs to invest in it.
“Me and Nicole work very well together. We are focused, and most importantly – consistent. We run everything without salaries and without renting offices, so that every penny we raise goes towards the research. I feel I can’t sit back, I have the responsibility of finding the drug for my daughter and Karen knows I am doing my best, If we, the parents and patients,  don’t do it – nobody will.”
Last year, Gil was told by doctors that the tumors in Karen’s head had grown even more, and could cause irreversible damage to her auditory system and balance. After consulting with doctors from all over the world, Gil and Sarit decided that Karen should undergo brain surgery in France by Professor Kalamarides, and last September the whole family traveled together and lived in his parents’ house in Paris.
Karen recovered well from the complex surgery, and Gil turned to his next task – coordinating a two-day international conference in Boston where  NF2 specialist physicians would gather together with researchers from academia and representatives from biotechs working on gene therapy but are not familiar with the disease.
“My goal was to expose the experts and researchers to our activities and to show them that we have a large, active, money-based nonprofit that insists on a long-term solution. We collected the names of the researchers through their articles and published research. Amazingly, most of them responded positively and expressed great interest.
We arranged the conference on a week where most of them were already in Boston because of another gene therapy convention, and so we saved on the costs for their flights and accommodation and the researchers didn’t get paid for attending the conference itself. I managed to get a conference room for free from a software company I know, with an amazing view on the 16th floor. Thirty-seven researchers from all over the USA and UK gathered in one place for the first time to discuss gene therapy to cure NF2. “
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Gil at the conference that he facilitated,  “We touched doctors with emotion” 
At the event, Gil used techniques from his high-tech world such as Design Thinking, which is the process of finding new solutions for a specific topic by interacting with people from different fields and diverse opinions.
He made presentations on the nonprofit and its aims, additionally, Gil raised empathy and appealed to the conference attendees through a video featuring NF2 patients from around the world who said “I need a cure” on camera.
“I delivered a lot of successful workshops in my life in the computer and tech industry fields, but the one in Boston was the most important and significant one for me as it is a workshop that will change my daughter’s future.”
Gil added that he told the conference participants that “we are ready to be hurt, ready to be disappointed, ready to lose money – but we will never stop holding the target so you can continue to strike at it.”
The conference itself was received with great success, and three months later, three US laboratories specializing in gene therapy began working on different approaches to neutralizing the defective gene and adding a good gene thought a friendly virus (vector).
“We have a long way to go, but this is the perfect start,” said Gil
Meanwhile, Gil’s parents – both doctors in France – are very proud of their son’s activities, especially given that in Europe it is usually not acceptable for patients or their parents to be involved in research in a proactive way.
Sarit is also very proud of her husband; “I salute him, really. For me, he knows no less,  than specialist doctors and sometimes even more than them. He worked many hours for that conference, and will continue to volunteer more hours in the future. “
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