Teen raises awareness of rare disorder at Greek Spot fundraiser

A teenager’s ongoing efforts to raise awareness about a rare disorder that has limited her grandmother’s ability to speak will continue Saturday, Sept. 1, with a fund-raiser and awareness event at the Greek Spot Cafe and Grill at Silver Sands Beach.

The event will run from 11 a.m. to 3 p.m., and will include face painting, raffle prizes and a silent art auction.

Juliana Harter, 16, and her team are organizing this, the third annual event, to raise awareness of Primary Lateral Sclerosis, which is in the ALS family of diseases. All donations and monies raised benefit the ALS Association, Milford Chapter.

“My grandmother has trouble speaking, walking and communicating with others, including myself,” said Juliana at last year’s event. “At first I couldn’t really understand my grandmother and I would nod my head and answer what I could understand. It really upset and frustrated me. It made communicating with her much harder. I felt that I wanted to help others understand PLS since it is a rare disease.”

People who have stopped by her fund-raiser in past years have learned the basics of PLS. It is a rare neuromuscular disease characterized by progressive muscle weakness, and belongs to a group of disorders known as motor neuron diseases.

According to literature that Juliana and her friends handed out, PLS causes a weakness to voluntary muscles like the arms, legs and tongue: It causes muscle nerves to slowly break down, which causes the weakness.

“Some symptoms may include weakness and stiffness in legs, difficulty in balance and speech problems. PLS can happen at any age, and usually occurs between the ages of 40 and 60,” their literature explained.

PLS is rare. Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is similar to PLS.

According to the Mayo Clinic website, primary lateral sclerosis is often mistaken for ALS.

“However, primary lateral sclerosis progresses more slowly than ALS, and in most cases isn’t fatal,” the clinic website states.

People who want to donate can to go to alsa.org.