PHILADELPHIA (WTXF) - Many of us remember when the "Ice Bucket Challenge" swept across social media in 2013.
Participants would videotape themselves dumping a bucket of ice cold water on their head, then challenge their friends to do the same. The purpose of this viral trend was to raise awareness for ALS, but for some, their knowledge of the disease beyond the Ice Bucket Challenge was slim.
"Many people might have known that it is a bad disease, but only 40 percent of the population realize it is always fatal," said Annie Swartz.
Known on social media and in the ALS community as Annie ALS, Swartz has been put in the undesirable position of being an unwilling spokesperson because of how deeply the disease has touched her family.
"My Mom became sick, a couple of my aunts and uncles became sick. They started showing odd neurological signs that nobody could put together," said Swartz.
It was then discovered that the Swartz family had a rare genetic form of ALS. For Annie, the news came all too late.
"By that time my Mom had passed it to me and unbeknownst to me I had passed it to my son, my only child," Swartz said.
A mother dealing with what she describes as not only her own inevitable death, but also her son's, is now desperately hoping that if people knew how bad things were they would ramp up the search for a cure.
Swartz is exhausting all avenues to spread awareness. On social media she discusses her son so people can see the process of ALS. She's even trying to launch and ALS awareness day and has asked celebrities to champion the cause.
"I just know if they were aware, they would care," said Swartz.