Grayson’s Ladder raises awareness for Rare Disease Day
Local nonprofit utilizes social media to connect families living with Alexander's Disease
CHATTANOOGA (WDEF) — The team behind Grayson’s Ladder is wearing blue to raise awareness on this Rare Disease Day.
The nonprofit is named after nine-year-old Grayson Ledbetter, who has Alexander’s Disease.
It’s a regressive brain disease.
Less than 500 people have it, worldwide.
Through social media, Grayson’s Ladder Founder Laura Ledbetter says the nonprofit has helped connect families experiencing the disease.
“Once you connect with another mom or dad that are going through this, it’s a different level of support because few people really understand it,” Ledbetter said. “Few physicians or other families have ever dealt with it or ever heard of it. So, it’s just nice when you’re on the phone with someone or say you’re messaging on social media just to kind of have that immediate connection. I know what their heart’s been through.”
Ledbetter also leads End Alexander Disease, another nonprofit representing all patients affected by the sickness.