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My name is Renata Tranjan. I’m 64 years old, married to Miguel, mother to Fernanda and Marco, and soon to become a grandmother for the first time. After many years of hard work, when I finally retired and was ready to enjoy life with my family, I discovered that everything was about to change: I was diagnosed with Amyotrophic Lateral Sclerosis (ALS).
ALS is a progressive neurodegenerative condition that weakens the muscles until they are no longer able to function. Simple functions such as walking, holding objects, speaking, and even breathing, gradually become more difficult. Today, my life expectancy is approximately five years. No one is ever prepared to receive a diagnosis like this. But despite the fear, the pain, and the uncertainty, I refuse to let ALS define my story.
I have very clear dreams: I want to support my daughter during her pregnancy, see my grandchild be born, and have the strength to him in my arms. I want to keep living alongside my husband, my children, and the people I love. For that, there is a real, although extremely expensive, possibility.
My ALS is caused by a rare mutation in the SOD1 gene, which affects fewer than 2% of ALS patients. For this specific mutation, there is a medication called Tofersen, a promising new treatment that can slow the progression of the disease and, in some cases, even reverse its symptoms. Today, it represents the greatest hope for people with the SOD1 ALS.
However, Tofferson costs around £300,000 per year. In Brazil, where I live, this medication is not available through the public healthcare system and it can only be obtained through private importation, which makes everything even more expensive and not affordable for my family. This is why I am creating this fundraising campaign.
With your support, I can access the treatment that may give me more time and autonomy. Every donation, independent of the amount, brings me closer to continuing my life and creating new memories with the people I love.
Alongside fundraising, I also want to raise awareness about ALS, the SOD1 mutation, and the urgent need for Toferson to become accessible in Brazil. The medication has not yet been approved by Brazil’s health regulatory agency called Anvisa, which means that many people have no chance of receiving treatment. Information is a powerful tool and we must pressure our health regulatory authorities and representatives to change this reality.
If you are able to contribute or share my story, you will be part of something much greater: a fight for life, science, and hope.
Everyone supporting ELA
P.S. In Portuguese, ELA is the abbreviation for ALS, but it also means the possessive pronoun ‘her.’ This makes the title chosen by my mother a clever play on words, effectively meaning ‘everyone with her’—a message of solidarity for ALS.