Spinal muscular atrophy (SMA) is a leading genetic cause of death in infants. It was considered incurable until the past several years when the first effective treatments (Spinraza, Evrysdi and Zolgensma) have become available. These medicines halt SMA progression but are extremely costly and therefore generally provided through public programs, with national governments negotiating supply with the pharmaceutical companies. Unfortunately, the Ukrainian government doesn’t currently provide any of these treatments. SMA children in Ukraine thus face a terrible existence, slowly losing motor abilities due to nerve cell injury and muscular atrophy resulting in breathing problems and, ultimately, death. As of 2020, there were 267 SMA patients in Ukraine.
Razom volunteers first recognized SMA problem in Ukraine when a 3-month-old son of a known Odesa Euromaidan and Self-Defense activist Vitaliy Svichynskyi, little Dima, got diagnosed with SMA in February 2021. Svichynskyi family started a $2.05 million fundraising campaign to save their son. We realized that this is a global problem and has to be solved at the government level, because these costly fundraisers and broken lives of children are devastating not just to their families but to entire communities and cities. Razom will engage SMA families and their communities to work with the Ukrainian government, hospitals, non-profits and pharmaceutical companies to put an end of SMA and bring Ukraine to the same level of SMA treatment as european countries and the US.
Our project aims to:
1. Work with the Ukrainian government to establish a comprehensive national SMA program as part of Ukraine’s 2022 budget (including newborn genetic screening, Spinraza, Evrysdi and Zolgensma treatments, rehabilitation, etc);
2. Provide assistance to children with SMA who need treatment now and can’t wait for developing government initiatives.
SMA is a progressive neurodegenerative disease that has ended far too many young lives full of promise, but today, for the first time in history, SMA children born in countries that provide early genetic screening and treatment can live a normal life as their peers do. Ukrainian children deserve access to the revolutionary treatments that can completely change the outcome for them, their families, and their communities.
We believe that “Save SMA Children” project will not only solve the problem of SMA in Ukraine, but also become an example of civic society engagement to successfully improve Ukrainian healthcare.
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You can mail a check to 140 2nd. Ave., Suite 305, New York, NY, 10003
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In 2018 we’re planning to cover expenses for 30 teams (6 people per team) at Oblast STEM competitions.
Total Budget is $4500
Director, writer and cinematographer with three completed award-winning shorts as well as a feature documentary in post-production. After starting his filmmaker career at 2009, Ruslan brings his skills in project management, process analysis and systems models (received during obtaining MA in cybernetics 2003-2008) and applies them to the creative thinking and artistic thought-processes of film. He also holds BA in Film and Television directing (from the Kyiv National University of theatre, cinema and television by Karpenko-Karyi).
“A chance to participate in The Co-Pilot project it’s an amazing opportunity to help others and to tell the story that will engage and inspire people around the world”
We are gearing up for our 2017 Mission trip. It’ll be a 3-month adventure during which we plan to work with neurosurgeons from several centers from all around the country. Dr.Tomycz has also been invited to deliver an address at the annual Ukrainian Neurosurgery Conference 2017 in Kharkiv.
May 20: arrive in Kyiv, Ukraine
May 22-26: meet with area surgeons at participating centers
May 29- June 9: two week master class with Igor Kurilets MD at the International Neurosurgery Center
June 12-13: Visit to Medical Institute of Sumy State University
June 14-16: Ukrainian Neurosurgery Conference 2017 in Kharkiv
June 19-23: one week course and master class operating in complex spine and craniocervical with Ukrainian spinal surgeons and trainees from Romadanov Institute and International Neurosurgery Center
June 24-July 7: Come back to United States for two weeks
July 10-21: two week master class with Dr. Schlegov at the Neurovascular Institute
July 24-August 4: two week master class in pediatric neurosurgery with surgeons at Lviv Children’s Hospital
August 5-18: travel to out-lying centers of excellence (Stryii, Ivano-Frankivsk, Odesa)
August 21-31: operate with surgeons at Central Military Hospital and International Neurosurgery Center in Kyiv
September 15: leave Ukraine for United States
The best way to train surgeons is by providing hands-on mentorship and assistance in the operating room. One of the primary goals of the Co-Pilot Project is the continued recruitment of high quality surgeons from United States and Canada to spend time with Ukrainian counterparts, consulting on patients and performing procedures.
Surgical Mentors traveling to Ukraine
Not all of the healthcare volunteers will be able to travel to Ukraine but they still will play an important role from home. Utilizing contemporary technology, including live streaming of surgeries and communication via social media the medical support staff will advice and mentor Ukrainian neurosurgeons as they confront difficult cases.
Medical Support Staff
Advisory Staff
Since our exploratory trip in 2016 we have identified a cohort of motivated and talented surgeons who are hungry for additional instruction and eager for collaboration.
Dr. Luke Tomycz is the newest addition to the pediatric neurosurgical team at Dell Children’s Medical Center. Dr. Tomycz finished first in his high school class of over 200 students and attended Massachusetts Institute of Technology (MIT) in Cambridge, MA where he double-majored in biology and chemical engineering. He accepted the prestigious Dean’s Full-Tuition Scholarship to attend medical school at the University of Michigan in Ann Arbor where he first developed an interest in neurosurgery. After medical school, he began his formal neurosurgical training at Vanderbilt University in Nashville, TN where he trained under the late Noel Tulipan, MD, a pioneer in fetal neurosurgery for myelomeningocele. During his seven-year residency, he spent two years obtaining an in-folded fellowship in endovascular surgery, becoming proficient in the treatment of aneurysms, AVMs, Moya-Moya syndrome, and complex dural AV fistulae of adults and children. After this, Dr. Tomycz spent an additional year at Seattle Children’s Hospital performing a large volume of complex epilepsy surgery with Jeff Ojemann, MD. Following an exhaustive job search, Dr.Tomycz was attracted to Austin as the city was in the process of launching a new medical school at the University of Texas.
Dr. Tomycz specializes in all aspects of pediatric neurosurgery including brain tumors, epilepsy, Chiari malformation, tethered cord syndrome, CSF shunting, and intracranial endoscopy. As one of the only dual-trained, pediatric and endovascular neurosurgeons in the country, he is particularly interested in Moya-Moya, brain aneurysms and AVMs, arteriovenous fistulae, and other complex neurovascular disorders in children as well as adults. His research interests include the use of engineering innovations to improve treatments for hydrocephalus and he has published on a wide variety of neurosurgical topics. Outside the operating room, Dr. Tomycz enjoys playing guitar and hiking in the mountains. He has travelled extensively to perform neurosurgery and take part in short-term medical mission work – in Cuba, Kenya, Honduras, Ecuador, and Ukraine.
Dr. Tomycz grew up with four grandparents who told stories of their youth and taught their grandchildren the language of their homeland – Ukraine. His parents were both born in refugee camps following the second world war, and came to this country in the early 1950s with virtually nothing. His father excelled in academics and went into medicine, and both Luke and his brother Nestor followed suit, pursuing a career in neurosurgery. During a long period of study and training that lasted more than 15 years, Luke resolved to return to the homeland of his grandparents and provide the kind of high quality care that children receive in the United States.
In 2014 at the peak of protests in the Maidan, Mariya joined several fellow Ukrainians living in New York City to create Razom, a young, energetic, and progressive start-up which seeks to amplify the voice of Ukraine to an American audience. An active member of the board, she is responsible for organizing cultural events as well as cooperating with government representatives, activists, and various civic groups and human rights organizations in support of Ukraine’s quest for democracy.
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Mariya is also heavily involved with fundraising for Razom’s projects via crowdsourcing, charity events, and online petitions. After graduating from Penn State University with a BA in Advertising and Public Relations and a dual minor in Entrepreneurship and International Studies, Mariya spent over 5 years in Manhattan working within the content marketing industry. She believes in the enormous potential of dedicated volunteers around the world working to rebuild Ukraine one project at a time.
Mariana Magala was born in Lviv, Ukraine. She graduated from The University of Chicago in 2013 and holds a B.A. in Economics and Slavic Languages and Literature. Currently, Mariana is a Strategic Analytics Manager at Interline Brands (subsidiary of The Home Depot) in Jacksonville, Florida. She specializes in analytics, business strategy, and nonprofit development. Mariana was the co-chair of a pro-bono consulting group for nonprofits in Chicago for 3 years and is currently the treasurer for a young professionals group at MOSH (Museum of Science and History in Jacksonville).
Mariana joined Razom’s Neurosurgical initiative in 2016. She is very excited to collaborate with the team and develop the initiative into a highly successful program.