Teen raises awareness of rare neuromuscular disease


Juliana Harter used her organization skills, artwork and some help from her friends and family to raise money for and awareness of a rare neuromuscular disease called primary lateral sclerosis (PLS).

Juliana’s grandmother suffers from PLS, and that inspired Juliana to tell people about the disease and to raise money to help find a cure.

“My grandmother has trouble speaking, walking and communicating with others, including myself,” said Juliana, 15. “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.”

Juliana organized the fundraiser, the second annual event, with her Brookfield-based Camp Greenknoll YMCA Leadership Team. It was held the July 4 weekend at the Greek Spot in Milford, which members of her family own, and offered up pamphlets and other pieces of information about PLS. There was an auction for one of Juliana’s paintings, and several raffle baskets.

People who stopped by the information booth 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 leadership group from the YMCA 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.

The teenagers raised $1,700 for the cause at their Milford fundraiser.

People who want to donate can to go to web.alsa.org, or use this link to get to Juliana’s webpage. http://web.alsa.org/site/TR?px=7346023&fr_id=12675&pg=personal.