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 walking proof that funding new treatments matters. I am talking, walking and driving again after 12 months of  being bedridden.

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. 

The Walk to Defeat ALS raises funds to support those affected by ALS and to spread awareness of the urgency to find treatments and a cure.

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, and presently there is no known cause or cure.

That’s why I’m walking. To change the statistics. To bring help and hope to those living with the disease. To ensure that no one ever hears the words: “You Have ALS” again. 

The past two years have brought incredible advancements in ALS research, expanded access to care for people living with ALS, and enabled legislation that impacts the quality of life of people with ALS and their families.

But, we can’t stop now. The key to a cure begins with you. 

Please consider walking with me or sponsoring me. With your help, we will be able to make a difference in the lives of people affected by this disease.