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Baby Artyom Pronin (21 mo) from Podolsk (Russia) was born with a rare genetic condition called Canavan disease and urgently needs treatment in the USA.

Artyom's brain lacks essential enzyme that causes deterioration of the white matter (myelin) in his brain, preventing the proper transmission of nerve signals. The consequences of this disease, if not treated, are irreversible and children usually die in infancy.

The leading researcher of Canavan's disease, Paola Leone, at Rowan University, NJ (USA) and famous American neurologist Christopher Janson (University of Chicago, Illinois) got interested in his case and invited him to participate in the clinical trial of cutting-edge technology treatment.

The treatment & rehabilitation cost around $100, 000. These funds Artyom's family raised in Russia last February by running numerous fundraising campaigns.

The added manufacturing cost of the treatment from the lab is a big blow — $800.000 per patient. Family has already exploited all their networks, friends and family.

That is why at this point Artyom urgently needs your help.


the essence of innovative treatment
In this treatment certain areas of the brain will be targeted with a deactivated adenovirus. This virus will transport a new, corrected gene to the body of the child. After this treatment Canavan disease stops its progress, and, if done early enough, his condition can be reversed.
Doctors talk about Artyom Pronin
The public appeal of Dr. Paola Leone (PhD), Department of Cell Biology & Neuroscience from Rowan University (NJ)
The public appeal of Dr. Christopher Janson (MD), University of Illinois in Chicago (IL)
It Is Extremely Difficult to Find Funding for Rare Diseases in the USA

The problem is that in the USA the manufacturing costs of such 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. That is why the cost of participation in the experimental treatment is so high, $800, 000 per child.

To learn more about the situation about private funding of this particular trial please read an article Two sick children and a $1.5 million bill: One family's race for a gene therapy cure

The fundraising for Artyom's treatment consists of small donations from average people —
$5, $20, $50, every little counts towards the goal.

$800 000

Artyom family needs to collect to cover manufacturing cost of gene vector
$84 111

Needed to start the treatment
$715 888

Artyom's family raised in Russia, on Gofundme and Facebook
campaign to support artyom Pronin
#RareAsOne: 7,000 Rare Diseases, Artyom's Fight
"We're going to have a front row seat to the biggest medical breakthrough in a generation."
— Dr. Maria Kefalas
The future of gene therapy is happening as we speak. Similar gene therapy treatments will give hope to many rare disease patients around the world.

Meet these fearless Canavan disease patients and their families and learn more about their efforts to drive forward scientific research and find cure for this fatal rare disease.
Together we can make it!
follow Artyom's story on social media
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