Our fruitful partnership with the Palm of Hope Foundation @palmofhope continues reaching more Ukrainian families with SMA kids in the war zone.
This month we managed to deliver portable ventilators to four kids with SMA type 1 in Khmelnytsky region. All 4 children had the early onset of SMA in the first weeks after birth, can’t walk, eat and breathe unaided.
Today, we would like to share exciting news about the annual auction organized by our partner, the “For others” nonprofit in Nashville, Tennessee.
For Others is a well-established, highly reputable organization working on the foster care program that improves the lives of many foster care kids in the US. This year their grand event involved such celebrity guests as Tyler Hubbard (Florida Georgia Line) @tylerhubbard, Ronnie Dunn (Brooks & Dunn) @ronniedunn, Carrie Underwood @carrieunderwood, Chris Tomlin @christomlin, Bear Rinehart @iamwilderwoods, Nate Bargatze @natebargatze, Ben Crane @bencranegolf, Ben Zobrist @benzobrist18, Marcus Allen, Mike Fisher, Darryl Strawberry, and many other sport and country music stars.
Nika Alexanyan is from Armavir in Russia. Nika was born on September 24, 2018, and has SMA type 1. Since three months of age, the child was on supportive therapy as a part of an open study by Novartis.
Unfortunately, Novartis is no longer developing this particular supportive therapy drug. However, Novartis promised to administer Zolgensma to all children of this open study instead.
Nika will receive her life-saving Zolgensma shot through Novartis Pharmaceuticals approximately mid-November 2021.
All the money that Nika’s family raised will be used to pay for Nika’s rehabilitation, and to support other children with SMA.
Meet little Sofia after Zolgensma and see her new accomplishments!
We cannot find enough words to share our gratitude to all artists and donors who helped to spread the message about Sofia on Instagram and helped us on Facebook.
Thank you! The miracle for Sofia became possible because of all of you:)
Songs for Tasya campaign
We want to thank all musicians who performed music for the “Songs for Tasya” campaign. Thank you to everyone who donated on Facebook and on Tasya’s Instagram. Together we saved Tasya’s life. On May 13, 2021, Tasya received Zolgensma.
To learn more about Tasya please follow her Instagram account.
