NEW YORK – After raising more than $ 2 million in just 80 days, the family and friends of Dmytro Svichynsky, the Ukrainian boy born with type 1 spinal muscular atrophy (SMA), saw the baby receive a dose of several million dollars. The dollar drug Zolgensma at the San Antonio Children’s Hospital in San Antonio, Texas on July 15.
Building on their success, the Svichynsky family and their supporters have now aimed even higher. With an ambitious and growing team of friends and supporters, Vitaliy and Mariia Svichynsky, parents of Dmytro Svichynsky, want to save everyone in Ukraine with ADS, a disease that targets the body’s motor neuron cells, weakening them every day. day until they finally stop working and the patient dies.
With this goal in mind, the Svichynsky family and their supporters launched what is emerging as a movement across Ukraine. This movement, known in Ukrainian as “Dity, mon vstyhnemo” (children, we’ll get there in time), gives the more than 250 Ukrainian children with ADS hope that they too will be treated on time.
But the Svichynsky family did not start with such great ambition in mind. Vitaliy Svichynsky began his quest to raise the roughly $ 2.05 million needed for a single dose of Zolgensma by setting up an ad hoc fundraising team in Ukraine, the United States, Canada and Europe. He contacted friends and colleagues in various fields, including civic activists, journalists, public figures and politicians. In turn, they introduced the son of Mr. Svichynsky. In doing so, they also publicized the problem of SMA in Ukraine and learned how serious the problem is in the country. They quickly learned that at least a dozen other families were also fundraising for Zolgensma.
With help, the movement began to gain momentum. On April 10, representatives of different Ukrainian American organizations organized an online fundraising marathon called “Life for SMA kids”. Moderated by Ukrainian journalist Vakhtang Kipiani, the event brought together members of the Verkhovna Rada Ivan Krulko, who heads the parliamentary budget committee, and Serhiy Koleboshyn, as well as a representative of the Ukrainian health ministry, Arsen Dzhumadilov.
During this event, Mr. Svichynsky proposed that Ukraine, which had recently adopted a new mode of procurement of innovative drugs, use this measure to procure treatments for ADS. If implemented, the procedure could start in Ukraine by the end of 2021. The measure requires pharmaceutical companies to first submit formal evaluations of a given drug to the Ukrainian government. Parliament would then have to pass a bill authorizing its use.
But members of the growing campaign to save everyone with ADS in Ukraine still did not know whether the country’s politicians were willing to fund the treatment of ADS nationwide. The team got back to work in an effort to complete fundraising for Dmytro Svichynsky, but now their additional focus was to ensure that every Ukrainian child with ADS is treated.
On May 26, just days after the fundraiser for Dmytro closed, Mr. Svichynsky, along with representatives from Razom, the Ukraine-based non-profit Manifest of Peace, the Kiddo charity fund and digital marketing company MAS agency, held a press conference in Ukraine. At the press conference, held at the Ukrainian news agency Ukrinform, the organizers presented their vision for a comprehensive SMA program in Ukraine. They officially launched “Dity, mon vstyhnemo” (kids, we’ll get there in time), a campaign that is now supported by the Ukrainian American Business and Professionals Association, the Big Dreams Children’s Foundation, the Ukrainian San Antonio and the Honorary Consulate of Ukraine. in Pennsylvania.
There are currently three treatments on the market for AMS. Zolgensma, a gene therapy drug, is only approved for children under 2 years old (or children weighing less than around 30 pounds). Two other drugs – Spinraza and Evrysdi – are available to treat older children, but they require lifelong treatment.
Eight Ukrainian children, including Dmytro Svichynsky, have received a dose of Zolgensma in the past two months, five of whom have won a special lottery program run by Novartis, which provides the drug to children in countries that have not. no access. Fourteen other Ukrainian children remain eligible to receive the Zolgensma.
That leaves some 230 Ukrainian children and their families desperately waiting for the Ukrainian government to procure one of the other two drugs – Spinraza or Evrysdi, which are registered for use in Ukraine.
The movement led by Mr Svichynksy saw a major turning point on June 18 during a meeting with the new Ukrainian Minister of Health, Viktor Liashko. Joined at this meeting by representatives of several patient advocacy groups, Mr. Svichynsky made an incisive request to Mr. Liashko. He asked the minister to help cut red tape to speed up the process of purchasing the much-needed SMA treatment that 38 countries, including neighbors Ukraine, Poland and even Russia, are already providing free to their citizens .
Meanwhile, Mr. Svichynsky and the team decided to create a website to feature the stories of SMA patients, making their plight visible and known to the public. The group launched the vstygnemo.org.ua website in August, marking SMA Awareness Month.
To advertise the site, the team printed endearing stickers with smiley faces and signs that read “Save the Children SMA”, “SMA is Treatable” and “We will do it on time”.
Mr Svichynsky and the team urged parents of SMA children to contact their local government officials, distribute the stickers, and advocate for their children’s rights.
The sticker campaign culminated on September 7, when every member of the Verkhovna Rada received a sticker and flyer about the SMA. Representatives of each political faction took to the podium in the Rada, SMA stickers on their lapels, while Mr. Krulko gave a passionate speech in support of the SMA by asking all members to vote for the necessary law to procure innovative drugs and ensure that there is money in Budget 2022 to fund drugs for ADS. The law was approved exactly two weeks later by an overwhelming majority.
How was it possible to achieve so much success so quickly? The answer lies in Mr Svichynsky, who is a master political and community organizer. He started the campaign for his son by bringing together a large network of activists with whom he had previously worked in Odessa in 2014, when he organized an ad hoc group widely recognized for saving the city from Russian occupation.
Mr. Svichynsky said networking, training and advocacy are constant work and take place at multiple levels, from working with one person to working at the national level.
Oleksii Zakharchenko, the director of digital marketing agency MAS, is one of the key figures promoting social media for the campaign. He ran a very sophisticated fundraising management workshop that trained new volunteers. During this workshop, Mr. Svichynsky stressed that a successful campaign must be ready to replace an individual whenever the group, for whatever reason, loses a member. It taps into the unique resources of each new member, Svichynsky said.
This expert planning has resulted in a substantial increase in public and government support. The entire Ukrainian parliament health care committee, headed by Mykhailo Radutsky, affirmed that the pledge supports the plan to purchase drugs against AS in Ukraine.
Ukrainian Minister of Infrastructure Oleksandr Kubrakov has become a strong spokesperson for SMA treatment in Ukraine. Media coverage has grown significantly with four of the largest channels reporting on SMA campaign developments.
Perhaps more importantly, on July 29, Andriy Sadovyi, the mayor of Lviv, urged Zelenskyy to get involved and support the cause.
“Please, Mr. President, only you can do it,” Sadovyi said at a joint session of the Presidium of Local and Regional Authorities and the President of Ukraine, which was also attended by the President. Prime Minister and Cabinet of Ministers.
“Give each of these 250 children before they turn 2 the chance to live!” ”Mr. Sadovyi said.
On June 1, Zelenskyy announced that Ukraine would start the first SMA screenings by January 2022, which is crucial to detecting SMA early enough for a child to receive treatment for Zolgensma.
Indeed, the progress made by the campaign has been enormous, and Mr Svichynsky said it will continue until all ADS patients in Ukraine are treated.
Olya Yarychkivska, who heads the US branch of the SMA campaign on behalf of Razom, said members of the group are motivated by the success of the campaign and greatly encouraged by Mr. Zelenskyy’s promise to Ms. Yarychkivska to procure SMA drugs after she handed him a stack of smiley stickers during a community meeting on September 21 at the Ukrainian Institute of America in New York City.
“Our vision is to see Ukrainian children born with SMA receive early diagnosis and treatment so that they can grow up normally. We see it in the United States where all drugs are covered by insurance, ”Ms. Yarychkivska said.
Big Dreams Children’s Foundation, a US-based 501 (c) 3 organization that raised funds for Dmytro Svichynsky, raises funds for the families of 14 Ukrainian children eligible for Zolgensma. Readers who wish to support the effort can send checks addressed to Big Dreams Children’s Foundation, memo: Save SMA children, 25 Old Kings Highway North, Suite 13, # 115, Darien, CT 06820.
Readers interested in learning more about the campaign are encouraged to attend in-person events with the Svichynsky family in New York at the Ukrainian Institute of America on October 17 at 2 p.m. (register at bit.ly/whatissma) or in Washington on October 22 at Ukraine House at 6 p.m. (register at bit.ly/smawdc).