We need your help to save our little girl, Olga (Olenka) Shkrinda (2 years old), who was diagnosed with a terrifying, 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 2 years old are typically speaking, moving around, playing with others, Olenka cannot crawl, sit up on her own, roll over, hold her head up, or speak.
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, and families across the country and across the world and found out that more can be done!
The answer to our fears and prayers is gene therapy – an experimental technique that uses genes to treat or prevent diseases by inserting a gene into patients’ cells instead of using drugs or surgery. The work on gene therapy for Canavan Disease is lead by Dr. Paola Leone, Ph.D., a gene therapist in New Jersey.
But as with any progressive disease, early intervention is critical.
Our #1 fundraising goal is $1.14 million to help bring this treatment out of the lab and available for children like Olga who have Canavan Disease. We are so grateful for all generous donations we were able to obtain via social media means, such as Facebook and Instagram. Our words cannot express how much support and empathy we are receiving every day from many of you…
As of today, 5/5/2020, we reached 26% mark of our goal, and are asking you to help us collect the rest.
We have been so humbled by all your support and love. Please continue sharing our story with your friends, network, and communities. Without your support, we will not survive. Your support – whether financial or informational - means a world to us.
Olga is so grateful for your support!
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.
2) Is my donation tax-deductible?
Yes! all donations made on this page are tax-deductible. If you made a donation over $250 you will receive a receipt via email. For any donations below $249, your credit card records are sufficient.
3) 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.
4) Your campaign story says you need $1.14 million by the end of May, while previously you have been targeting earlier dates. What date is it?
Because we have not been able to reach our goal sooner, doctor Paola Leone allowed us to extended the deadline to raise the funds, but the time is mission critical to allow Olenka not only to slow down the disease post treatment, but to show improvements.
- Ismail Faseeh