Real-life stories
Meet Anush
Anush and her journey from crowdfunding to advocating for access for all
Anush
In February 2025, a kind-hearted work manager launched a crowdfunding campaign asking her loved ones not to give her gifts for her birthday, but rather, to donate any amount towards purchasing medicines for her colleague Anush, who lives with SMA.
Anush is 24 years old and works at a social enterprise that provides home-based work for mothers of children with disabilities in Armenia. Though a tireless employee, her colleagues and manager had noticed how she was starting to struggle to keep up with her tasks. Surrounded by such caring team, Anush did not hesitate to share her increasing difficulties balancing work and the management of everyday activities. Something as simple as eating had started to take over an hour of her time at every meal. Anush, who also works a second job as a website translator for a children’s hospital, knew that medicines for SMA existed, but they were completely out of reach. None of the existing drugs were registered in Armenia, meaning they were not only not covered by the state, but people could even not purchase them out of pocket. Buying the medicines in another country was possible, but unaffordable for Anush’s family. Learning about this, her manager decided they should not waste another minute.
Within a month, the campaign raised enough funds to cover the first three months of treatment. Anush was able to secure the medication from abroad and begin her therapy. She immediately saw the benefits. After a year and a half not being able to eat by herself, she regained the ability to lift her fork and spoon within ten days of starting treatment, allowing her to eat independently again, something that is important to her because she is meticulous and likes to make sure that nothing spills on her, which sometimes happens when others feed her. One year in, improvements have continued. She can now pick up a pen, make short notes in her journal, use her computer and her phone with her right hand. Her breathing has improved, her speech is clearer, and she no longer experiences shortness of breath while talking. She even gained a few kilograms. But Anush’s goals and dreams go well beyond her own person.
To make them aware of the existence but unavailability of SMA medicines, Anush sent letters to the Ministry of Health and provided in-person testimonies. She then founded the first SMA patient organisation in Armenia, Association to Support People Living with Spinal Muscular Atrophy, so that her impact in defending the rights, raising awareness, and supporting families living with SMA could be more systematic. Because of her efforts, the medication has now successfully been registered in the country, and negotiations are currently under way to secure government funding to reimburse the medicines.
Anush’s neurologist joined forces in this advocacy journey, and the two convinced a larger foundation to start a fundraiser that secures treatment for all six children living with SMA in Armenia while a reimbursement decision is made, hoping that this will soon become unnecessary. Two other Armenian adults who live with SMA continue without treatment. In the meantime, Anush has had to resume crowdfunding for her own therapy, as her current supply will run out in June.
Anush had to continue crowdfunding on different platforms. So far, she has managed to sustain her therapy without interruptions. Every month, she reports results and uploads photos of the medicine packages as proof of purchase. Every month, she needs to prove to the people who generously help her that her health and life are worth the efforts people invest.
Treatment is there to help people thrive: Anush knows that every small physical gain helps. Her own treatment allows her to feel much more confident both physically and mentally, no longer fearing that her life could end at any moment. This renewed strength enabled her to achieve a great amount not only for herself, but for all people living with SMA in Armenia. With negotiations with the Ministry of Health underway, she is determined to continue fighting for the true needs of people living with SMA, like state support with personal assistants, so that quality of life can be improved.
When access to medicines is lacking, people turn to crowdfunding—an inequitable and unsustainable workaround that leaves many behind.
Interview conducted in writing in April 2025.
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