Saving Arina (Spinal Muscular Atrophy Type 2 SMA)
Donation protected
Thank you for stopping by!
Today, we are helping precious Arina win the battle against Spinal Muscular Atrophy( SMA Type 2).
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All daily updates and details can be found here(in Russian):
https://www.instagram.com/arina_rud_sma/
I will translate and post updates in English as they become available.
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BACKSTORY
Arina's dad Artiom and I have spent years behind the same school desk. Together with his better half, Katya, they are raising two sweetest children in Brest, Belarus. For years, we've called each other around New Year to catch up on the news and exchange the warm wishes. This year promised to be no different.
My cheerful New Year's video chat this year had gotten silent with the news of Arina's diagnosis - Spinal Muscular Atrophy / SMA Type 2.
TREATMENT OPTIONS
With SMA Type 2, the symptoms of muscle weakness usually appear close to 18 months of age and require very prompt treatment to minimize the damage to the little body.
The gene replacement therapy that goes by the brand name Zolgensma is a one-time infusion that delivers a functional copy of the defective or missing gene to affected cells. Before this option became available, treatment of SMA consisted of managing the symptoms, providing respiratory support as needed and preventing disease complications.
Zolgensma is indicated for the treatment of kids less than 2 years of age. This leaves less that 6 months to fund the purchase and schedule the injection of the treatment to initiate Arina's healing process.
ALTERNATIVE TREATMENTS
Belarus is one of very few countries in the region that does not have any government programs or funding related to SMA. This means that Arina's help may come from two sources:
1) a self-funded purchase of Zolgensma
2) the lottery arranged by the original drug maker Novartis
While we hope to be selected by Novartis for a fully-covered treatment, our entire focus is on raising sufficient funds to acquire the treatment as soon as possible.
FUNDING
There is a long list of charitable bank accounts already available for Arina in Belarus.
GoFundMe allows us to take this fundraiser even further and receive financial support from all parts of the world in a much easier and more accessible way.
All proceeds will be held in a dedicated Savings Account in one of the top US Financial Institutions. By April/May 2021, 100% of received donations will be wired to BelarusBank and deposited into Arina's charitable account.
https://belarusbank.by/ru/33139/33142/30394/blagotvoritelnost/6091
Arina will receive 100% of the wired proceeds since charitable transfers are not subject to taxation or any additional fees.
All financial reports will be posted as they become available, too.
=-=-=-=-=-=-=-=-=-=
We hope you choose to join Arina's growing family of supporters!
=-=-=-=-=-=-=-=-=-=
For those who live in or near Belarus, you may find additional details on other direct ways to help by following this link:
https://taplink.cc/arina_sma_help
Today, we are helping precious Arina win the battle against Spinal Muscular Atrophy( SMA Type 2).
=-=-=-=-=-=-=-=-=-=-=-=-=-=
All daily updates and details can be found here(in Russian):
https://www.instagram.com/arina_rud_sma/
I will translate and post updates in English as they become available.
=-=-=-=-=-=-=-=-=-=-=-=-=-=
BACKSTORY
Arina's dad Artiom and I have spent years behind the same school desk. Together with his better half, Katya, they are raising two sweetest children in Brest, Belarus. For years, we've called each other around New Year to catch up on the news and exchange the warm wishes. This year promised to be no different.
My cheerful New Year's video chat this year had gotten silent with the news of Arina's diagnosis - Spinal Muscular Atrophy / SMA Type 2.
TREATMENT OPTIONS
With SMA Type 2, the symptoms of muscle weakness usually appear close to 18 months of age and require very prompt treatment to minimize the damage to the little body.
The gene replacement therapy that goes by the brand name Zolgensma is a one-time infusion that delivers a functional copy of the defective or missing gene to affected cells. Before this option became available, treatment of SMA consisted of managing the symptoms, providing respiratory support as needed and preventing disease complications.
Zolgensma is indicated for the treatment of kids less than 2 years of age. This leaves less that 6 months to fund the purchase and schedule the injection of the treatment to initiate Arina's healing process.
ALTERNATIVE TREATMENTS
Belarus is one of very few countries in the region that does not have any government programs or funding related to SMA. This means that Arina's help may come from two sources:
1) a self-funded purchase of Zolgensma
2) the lottery arranged by the original drug maker Novartis
While we hope to be selected by Novartis for a fully-covered treatment, our entire focus is on raising sufficient funds to acquire the treatment as soon as possible.
FUNDING
There is a long list of charitable bank accounts already available for Arina in Belarus.
GoFundMe allows us to take this fundraiser even further and receive financial support from all parts of the world in a much easier and more accessible way.
All proceeds will be held in a dedicated Savings Account in one of the top US Financial Institutions. By April/May 2021, 100% of received donations will be wired to BelarusBank and deposited into Arina's charitable account.
https://belarusbank.by/ru/33139/33142/30394/blagotvoritelnost/6091
Arina will receive 100% of the wired proceeds since charitable transfers are not subject to taxation or any additional fees.
All financial reports will be posted as they become available, too.
=-=-=-=-=-=-=-=-=-=
We hope you choose to join Arina's growing family of supporters!
=-=-=-=-=-=-=-=-=-=
For those who live in or near Belarus, you may find additional details on other direct ways to help by following this link:
https://taplink.cc/arina_sma_help
Organizer
Evgeniy Eugene Prystupa
Organizer
Vancouver, WA