It was June 2014 when my daughter lost her voice. In March 2015 my daughter Tiana was diagnosed with a severe form of ALS caused by FUS (fused in sarcoma) 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. Tiana 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 accounts for about 4% of inherited ALS. I started a clinical trial in July 2022. Thanks to this trial I am able to talk, walk, swim, and drive!
I would like to invite you to help me make a difference in the lives of those affected by ALS. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatments and a cure. Please consider joining our team in the Walk to Defeat ALS® or choose a team member from the list and donate to our cause.
WHY WE NEED YOUR HELP
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
That’s why we’re participating in the Walk to Defeat ALS. To bring hope. To raise awareness. To provide resources and services to families free of charge. To help unlock the mystery of ALS and find the key to treatments a cure. Will you join us?
ABOUT ALS
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.
ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to provide help and hope today!