I am Andrea Allen
a family member in a familial ALS family,
living with ALS
Tianna passed away on April 5, 2015, at the age of 27.
It was June 2014 when my daughter lost her voice. In March 2015 my daughter Tianna was diagnosed with a severe form of ALS caused FUS gene mutations. The doctor initially told us that she had 6 months to live.
After suffering a coma that 6 months turned into 3 weeks. Tianna passed away on April 5, 2015, at the age of 27. A few days before her daughter’s 2nd birthday.
Fast forward to December 2021. This is the year the doctor gave me my diagnosis of the same form of ALS. FUS ALS plus I also have mosaic cell. It account for 2% of ALS patients. I started a clinical trial in July 2022. Thanks to FUS clinical trial I am walking proof that funding new treatments matters. 12 months of being bedridden now I can talk, walk and drive again.