Hello, my name is Anush, I’m 23 years old. I love life immensely as it is, but unfortunately, right now I’m in need of support. What you’re about to read was written with one of the three working fingers on my right hand, and I kindly ask you not to remain indifferent.

I was born with Spinal Muscular Atrophy (SMA) Type II, and because of this disease, I am classified as a first-degree disabled person.

The only way to combat the progression of SMA is by taking a medication called Evrysdi (Risdiplam), which compensates for the lack of SMN protein in the body. However, the price of Evrysdi is extremely high, and I am forced to ask for help from kind-hearted people in order to preserve the strength I still have.

In the photo, it’s me and my dear friend Shogher. Thanks to her and the support of my friends, in February 2025 we managed to raise the amount needed for a 3-month supply of Evrysdi, and I started taking the medication. I personally felt the positive effects from the 10th day of treatment.

THE PROBLEM

SMA is a genetic condition that leads to a deficiency of essential proteins in the body, causing muscles to weaken and degenerate over time. I have completely lost mobility, except for a few fingers on my right hand - I typed these lines with my index finger.

Due to spinal curvature and damage to internal organs, I have had severe respiratory insufficiency since childhood, which causes constant coughing and shortness of breath.

To prevent further progression of the disease and preserve my remaining strength, neurologists prescribed Evrysdi at a dosage of 6.6 ml daily.

Over the past year, I could no longer hold a spoon, eat by myself, write, or draw.

But after starting Evrysdi:

• My hand regained some strength,
• I began eating on my own again,
• I’m trying to write again,
• I can breathe more freely, and
• My heart function has improved.

Unfortunately, these results cannot be maintained without continuous access to the medication.

Evrysdi is not licensed or officially available in Armenia. Currently, the only way to continue treatment is through fundraising.

SOLUTION

Through this fundraising campaign, I will be able to purchase the necessary medication for the upcoming months, hoping that in the future Evrysdi will become available in Armenia.

Why it’s important to continue Evrysdi treatment:

• Research shows it strengthens muscles and improves internal organ function,
• I may regain skills I lost in the past 1.5–2 years (holding a spoon, drinking without a straw, drawing, writing),
• My breathing and sleep will improve as muscles get stronger,
• The medication provides sufficient SMN protein in my body, which stops the disease from progressing and prevents further irreversible damage.

The earlier and more consistently the treatment is started, the better the outcome.

For example, newborns who start Evrysdi early often never lose the ability to walk.

In my case - I can preserve my hand mobility, which is crucial for continuing my work and creative passions.

Yes, I continue to study and work on various projects, which brings joy to my everyday life, helps me partially cover personal expenses, and allows me to meet wonderful people.

Some of my drawings are shown above. I’m eagerly waiting for the day I can draw again.

Fortunately, as with any hardship, my family, friends, and many kind people are by my side in this journey as well. I’m deeply grateful for the compassion and warmth that led to the start of the fundraising campaign through a Facebook post in February. As a result, on March 19 I received my first dose of Evrysdi.

COST OF TREATMENT

To continue treatment, I need to raise 912,000 AMD monthly, which equals:

• 1824 people donating monthly 500 AMD
• 912 people donating monthly 1,000 AMD
• 183 people donating monthly 5,000 AMD
• 91 people donating monthly 10,000 AMD

Even the smallest contribution can make a big difference.

You can access the project budget and medical documents at this link.

FREQUENTLY ASKED QUESTIONS

✨ What is SMA?

Spinal Muscular Atrophy is a genetic neuromuscular disease that results in a lack of essential protein in the body, leading to progressive muscle weakening and loss of mobility.

✨ What is Evrysdi?

Evrysdi is the first medication for SMA that can be taken at home in liquid form.

✨ Can SMA be cured?

Evrysdi does not cure SMA, but it halts disease progression, prevents complications, improves motor function, and enhances overall well-being. Starting treatment early is crucial.

✨ Does SMA affect the brain?

No, SMA does not affect brain function.

✨ How is SMA inherited?

Family members can be carriers of the SMA gene without knowing it. A child can be born with SMA even if both parents are healthy but carry the gene. Genetic testing is required to confirm or rule out the diagnosis.

THANK YOU FOR EVERY CONTRIBUTION