Sirs,

My name is .

I’m informing you about the problem that patients who suffer from spinal muscular atrophy (hereinafter SMA) are dealing with, in our country.

SMA is a rare and deadly genetic disease that progressively weakens all muscles of the patient, causing a loss of basic functions such as walking, digestion, swallowing and breathing. SMA is number one genetic killer of children up to 2 years.

The cure for SMA, named Spinraza is recently discovered and approved by the FDA and EMA.
Our country currently has 70 SMA patients, including children and adults. Luckily, a year of struggle managed to achieve part of our goal – children have reached the cure.

Concern and fight are now connected with adults. Many of them. With those who invested all their remaining strength in institutional problem solving: to purchase the medicine for every single patient. We must not forget them.

With this letter, I urge you and all competent institutions: Please do not exclude those who made the most effort to bring the medicine in Serbia – our adult SMA patients. They deserve better future, too.

Thank you in advance.

Best regards with the hope that your initiative will extend the life of our brave citizens.
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