Help Cristina with Medication (ALS)

My mother was diagnosed with Amyotrophic Lateral Sclerosis (ALS) and we are making this little bag to raise funds for buying the motor assistance equipment she needs and to buy the EDARAVONE drug that is only available in the US and Japan. Her treatment, with 14 cycles, will cost $ 210,000 BRL - but it is the only medicine that has shown good results for combating the disease.




CRISTINA, 59, my mother, has always been a fighter. She educated and raised 3 children, worked hard from the beginning, and expected  a quiet old age with her grandchildren in São Luís, Maranhão (North-East Brazil). But, in November 2017, she was diagnosed with ALS (Amyotrophic Lateral Sclerosis), a degenerative and aggressive neural disease. In just one year, my mother has already lost partial movement of her legs and arms, needing a wheelchair; her speech and breathing are also well compromised. This has required adaptation of the whole house. Mom is still following up with a neurologist, speech therapist, psychiatrist, hematologist, water aerobics instructor and physiotherapist, who, due to her difficulty in getting around, often have to be hired to come home. Besides, I am the only daughter who lives in São Luís and I have needed to greatly reduce my working hours, as a broker, because I need to stay with my mother, who can no longer be alone in the face of her limitations and the risk of gagging or falling. This has significantly reduced income and, with all the expenses, we can no longer pay a caregiver so that I may be away from home for work. Mom is taking Riluzole, and although she is undergoing this treatment, she has not regained from the disease; making the picture worse day after day.




In recent months, friends in São Luís have been mobilising efforts to obtain necessary resources for the medicine called Edaravone, which has shown good results in other countries, but has not yet been approved by Anvisa (National Sanitary Surveillance Agency) in Brazil. So, we want to import this medicine from Japan, but each cycle costs an average of $15,000 BRL, and Mom will need 14 cycles. This medication would help to control the disease and increase hope for containing the progression of symptoms. For these reasons, we have opened sources for resource collection, such as an online kitty and an account for urgent donations.




The disease gets worse every day. When your chest muscles stop working, you can’t breathe on your own.




Patients who are using this new drug are showing good results, citing examples of strength recovery, some improvements with movement and, most importantly, stagnation of the disease. All patients had to purchase Edaravone with their own funds, since, being new and not having the regulation of the government agency, it is difficult to obtain