The "FRAY" Against Familial ALS
WHY the name, The FRAY Against Familial ALS?
“FRAY” - A battle or fight. A situation of intense activity, typically one incorporating an element of aggression or competition.
In 2014, Amyotrophic Lateral Sclerosis, aka ALS, aka Lou Gehrig's Disease, reared its ugly head into my family. At the age of 81, my Mom, Alvera Fray was diagnosed with the very rare, and fatal disease. And very rare it is, there are less than 6,000 new diagnosis’s a year in the United States. About 90-95% of ALS cases occur without any known family history or genetic cause, known as Sporadic ALS. The remaining 5-10% of ALS cases are known as “familial” ALS (FALS) and is inherited through a mutated gene with a known connection to the disease. In addition, 93% of people with ALS are white.
Fast forward to 2022, three years after Mom’s ordeal ended, I was tagged to enter the “fray”. On November 11th, the doctor that treated my mother informed me that I had ALS. The genetic testing showed that I had the mutated SOD1 gene that causes ALS, however it could not be confirmed that I received it from mom because due to her age and the time of her illness, she never received genetic testing. Nevertheless, mom's family, the Rolle’s have a history of neurodegenerative disease, two of her 10 siblings, Aunt Edith and Aunt Barbra were diagnosed with MS, the most diagnosed neurodegenerative disease. With the two ALS diagnosis and family history, our family is now part of the 5 to 10 percent of cases that are considered FALS.
The good news is, the most promising studies in understanding the disease, has come through the genetic research. The Fray & Rolle family has been referred to a small nation, a large pool of samples to be examined, a whole lot of people!!!! Currently the FDA has approved a pharmaceutical by Biogen that is specifically targeting the mutated SOD1 gene called Qalsody (Tofersen), that is showing signs of slowing the ALS symptoms by targeting the mutated gene. Qalsody is not only approved to treat symptomatic ALS patients, but also to be administered as a preventive to those who have been found to have the mutated SOD1 gene prior to the onset of symptoms. This is a positive start toward a cure, but it is just the beginning.
The FRAY Against Familial ALS is committed to raising money to support people in the FALS 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.
OUR GOALS FOR THE WALK
- To bring HOPE to ALS community!
- To raise awareness of FALS.
- To provide direction to families for free resources and services.
- To help unlock the mystery of ALS and find the key to treatments a cure.
- To Come Together and Have FUN for the Worthy Cause!