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SAVE ARTEM

$24,857 of $200,000 goal

Raised by 302 people in 11 months
Created September 1, 2018

I’m Alla, Artem’s Mom. Every single day I wake up and go to bed with one thought that pervades everything I do. My son is dying and I cannot do anything: I cannot breath for him, I cannot stop his pain, I cannot save my baby from the arms of death. This is a terrible, terrible feeling I live with every second of my life. 
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Ten long years my husband Norair and I could not conceive.  When finally I got pregnant I was the happiest woman in the world. I couldn’t wait to see my baby for the first time. I could not wait to count his toes, to smell the first fluff on his head.

Artem was born healthy and strong (9.2 pounds, 20 inches long) with no symptoms of any condition. First months he slept and ate a lot like any child of his age. At 4 months checkup our pediatrician noticed that Artem could not concentrate on his favorite toy and ran an additional genetic test. The result came devastating — our baby was diagnosed with fatal disease called Canavan.

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Canavan disease is a progressive, neurological disorder that begins in infancy and affects the brain. Artem lacks an essential enzyme, an important one, that causes toxic build-up in his brain. His motor skills have already been impacted. He cannot walk, sit, or stand on his own. As the condition progresses he will develop hearing loss, blindness, and total paralysis. If left untreated, the average life expectancy of children with Canavan is no more than 10 years old.

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When we first learned that our baby inherited this condition we were in shock and paralyzed. However, the more I read about Canavan, the more I learned. Professor P. Leone and her group at the Department of Cell Biology & Neuroscience at Rowan University in New Jersey, USA have made major breakthroughs in the understanding of how this condition can be treated with gene therapy.


At the moment Artem is 19 months (he is going to turn 2 y.o. in June) and his brain still has plasticity. It means that we need to move fast and get this treatment as soon as possible. It is important to act  Now. The therapeutic window for Canavan disease is up to 3 years of age.

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Our #1 fundraising goal is $200,000 dollars to help bring gene therapy treatment out of the lab and available for children like Artem who have Canavan Disease.

We cannot watch our baby die, not when there is a treatment available that could save him. The $400, 000 will help to fund a clinical trial initiated by families with children afflicted with Canavan disease.

By supporting our fundraising efforts, you can help save our boy’s LIFE and be a part of the future of medical science.


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Artem with his favorite person and big brother Sergey (below)

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 I love Artem more than anything else in life. He is my everything. My little hero, my sweetheart. 

So many people heard us and reached out to help. 

We feel so humble and blessed with all of your support. 

The words cannot explain how deeply touched and grateful we feel.

Thank you for helping us save our baby! ❤️

Alla, Norair (Artyom’s Mom and Dad) and Sergey(12 y.o)


HOW YOUR MONEY CAN HELP:

1. Donate any amount: $5, $10, $50.  Every little helps.
2. Email saveartem.com web link  to all contacts you know

WHERE IS YOUR MONEY GOING?

Every dollar goes to the 501(c)(3) nonprofit organization, Rowan University Foundation. Rowan is funding this experimental treatment for small group of children including Artem. The scientists at Rowan developed a novel gene vector that has had remarkable results in the lab. At the moment we're funding the IND (Investigational New Drug) stage of the treatment development. If successful, the new gene therapy for Canavan disease will be available to all patients in need. 100% of the funds raised here will go toward covering manufacturing cost of new gene therapy at the GMP facility for Artem.  

WHY THE TREATMENT IS SO EXPENSIVE?

In the USA the manufacturing costs of medicine for  Rare Diseases usually extremely expensive and new drugs/procedures need to go through FDA approval as well. Currently there is no investor or manufacturer in the US to cut the costs for IND. That is why the cost of participation in the experimental treatment is so high.


WHAT HAPPENS NEXT

P. Leone and her team are working tirelessly to meet all FDA requirements to get the clinical trial up and running.

There are few important milestones needed to happen before Artem can receive his treatment:
 
• Final safety studies (accomplished)
• FDA approval to proceed with IND (accomplished)
• Manufacture GMP level drug production (in progress)
•  Start IND

Video© Vlad Pervozvansky
Photos © Vera Smirnova
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Dear Artyom's friends & supporters,
I am writing today to share our latest news with you.

On April 23rd, 2019 Dr. P. Leone, her team and the Landsman family had an important meeting at FDA office (U.S. Food and Drug Administration). The meeting went better than everyone expected. The FDA removed the pause on gene therapy for Canavan Disease.

To say that we are happy is to say nothing. I am extremely grateful to all doctors, researchers, policy makers who have joined us in the fight to find the cure for Artyom and other 7 children with Canavan.

However, there are a few last preparations needed to be done before the treatment.

In the beginning of May Dr. Leone’s team will reserve the slot at the GMP facility and they start manufacturing the gene vector for the clinical trial. We need to transfer our first $400,000 to pre-pay for manufacturing of gene medicine.

Across all fundraising channels we've raised more than $600, 000 so far. We still have some time to raise approx. $180, 000 more. Our total bill is $800, 000.

Artyom is doing well these days. Last few weeks he had a teething problem, did not eat well and lost some weight. Dad and I bought him a verticalizer. Now he is practicing to stand up on his own for 10-15 minutes per day.

We also attending neuromovement classes by Anat Beniel’s method. The therapy helps Artyom to relax spasms in his muscles & helps to create right neuro signals in his brain responsible for movement.

We want to make sure that Artyom has maximum health & strength before he receives his brain surgery.

That’s all for now.

Please share Artyom’s fundraiser at saveartem.com or https://www.gofundme.com/save-artem/ among your family, friends, colleagues or donate $5, $10, $20
No amount is too small. It will help us to get closer to our goal.

Thank you for helping us save Artyom!

P.S. I’d like to say special thanks to Garry & Jennie Landsman for being great advocates for our children at FDA.

Sincerely,
— Alla Pronina (Artyom's Mom)

In the pictures:

1) U.S. delegation to FDA.
The Landsman family: Jennie, Garry, little Benny & Josh (front raw), Prof. P. Leone (in the center) & Dr. Christopher Janson (in blue shirt ) & the P. Leone's team

2) Dr. Janson’s Letter to support our campaign

3) Little Artyom practices standing in verticalizer
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Dear friends & Artyom’s supporters! ❤️❤️❤️

Today we would like to share an exciting news with you!

Thanks to all of you, from September to February, we’ve managed (with YOUR HELP) to collect $400,000. This is a half of needed amount!

So we’ll go ahead and change needed amount from $800, 000 to $400, 000.

It’s a major breakthrough in our collection and we cannot find words to express how grateful we are that we’ve made it that far!

We believe that the second half will be much easier to raise with your help.

In order to help Artyom you don’t need to do anything special. You can share this fundraiser ( https://www.gofundme.com/save-artyom-pronin) with your friends and with contacts from your social networks.

According to Gofundme help page, if 1 person shares the cause he/she cares about to 3 more people and they respond, the collection is considered successful.

Therefore, it is so important to connect and help.

Or you could also donate any amount, even the small $5, $10 amounts will do their job and bring us closer to the goal.

Thank you for being with us.
Your support means the world to us! ❤️

Sincerely,
Alla & Norair (Artyom’s Mom and Dad)
+ Read More
Dear Donors & followers, we are providing a quick update explaining how the funds from the Save Artyom Pronin campaign are being collected.

Gofundme is the US-based fundraising platform that requires a certain criteria to start the campaign. Thus, only citizens or permanent residences of a handful of regions/countries can run a campaign on the site. Unfortunately, Russia is not on the list.

To learn more please follow this link https://support.gofundme.com/hc/en-us/articles/360001992667-Requirements-to-Withdraw-from-GoFundme

Fortunately, the world is not without decent people.
Alla Pronina, (Artyom's mom) reached out to her American friend, Zina Semenova. Zina generously agreed to start Save Artyom Pronin campaign on Alla's behalf. Since September of 2018 all funds raised on gofundme on behalf of Alla went directly to the US financial institution. When the amount will be fully collected or the Pronin family decides to end the campaign, all the funds will be deposited for Artyom's treatment at Rowan University.

Meanwhile, we are doing weekly reports about all funds raised across all fundraising channels on our official vkontakte page https://vk.com/proninartem2017 (only in Russian) or Facebook https://www.facebook.com/donate/577464586060991/
When the campaign is over, we will notify you one more time about the funds that raised on gofundme and will attach the wire transfer to ensure that all your money went to the Rowan University Foundation.

We appreciate your business and thank you ever so much for your support,

Sincerely,

Zina Semenova on behalf of Alla Pronina
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Dear donors, thank you so much for your constant help & support!

Many people near and far decided to participate in Artyom's campaign and donate. There is no words to describe how humble & blessed we feel. Thank you!

Since beginning of this campaign we were able to raise
$48,383. It is impressive sum of money but we're a little bit behind of our goal.

By November 15, 2018 we need to pay for the first stage of treatment, for the gene vector reagents that cost $100,000.

This stage is really important for Artyom and all the children in his group. They all urgently need the treatment for Canavan's disease. Without these reagents the money we've already raised for surgery and rehabilitation would not matter.

⛔⛔⛔ $100.000 goal means that in the next 7 days we need to collect close to $50.000

Please help us to make this breakthrough & achieve our next goal & deadline.

Please share this information with your social networks, ask close friends to participate and donate $5, $10, $20, every little bit helps.

Together we can achieve the next milestone.

We've seen campaigns that raised funds in the last minute. We keep on going, we never give up, we believe that all together we can make it happen & save our Artyom.

Thank you so much for your love & support ❤️
+ Read More
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$24,857 of $200,000 goal

Raised by 302 people in 11 months
Created September 1, 2018
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