Daily Point of Light # 2776 Sep 24, 2004

Nitsa Gianakoulas attends Bishop Gorman High School, and up until this school year; her grandfather dropped her off at school each morning on his way to Mass. Most sixteen year olds think of school dances and high school football games; however, Nitsa uses her energy to raise public awareness about the devastating disease, ALS and to raise funds to support the patient and family programs of The ALS Association Nevada Chapter.

ALS is more commonly known as Lou Gehrig’s disease. It is a progressively paralyzing and always-fatal illness that strikes an American adult every 90 minutes. Lack of public awareness about the disease is one of its biggest obstacles. The ALS Nevada Chapter is the only resource of direct, hands-on assistance to Nevada’s ALS patients and their families. Nitsa’s grandfather was diagnosed with the illness in January 2003, and she has learned quite a lot in a short period of time.

Walk to D’Feet ALS is the annual, signature event hosted by a nationwide network of chapters of the ALS. Nitsa formed her own walk team, Fightin’4 Frank, to support her grandfather. She told her story to members of her gymnastics team and members of the Gym Cats began to donate their allowances towards the cause. Nitsa also told her grandfather’s story in a letter sent to more than 100 relatives and friends. She told of what a great role model her grandfather had been and how ALS has changed his life. He can no longer drive, so she is no longer able to ride with him to school each morning.

Nitsa sees ALS up close through her grandfather. It seems to her that something else is taken from him each week. After giving up driving he then went to using a cane. From there he had to progress to a walker, and now he must use a wheelchair. His voice is even getting weak and he has difficulty swallowing sometimes.

Nitsa’s letter was distributed and then some of those she wrote to also shared it with their friends, neighbors and co-workers to help garner more support for Fightin’4Frank. Soon she began to receive donations from total strangers.

On Walk Day, members of Nitsa’s gymnastics team joined members of her family and the other 43 members of Fightin’4Frank. Their team received the Golden Tennis Shoe Award for the largest family team, and Nitsa received the award for the most donations raised by youth. She was able to collect a little more than $5,100.

Nitsa’s thank you letter continued to paint the picture of the challenges her grandfather and other victims of ALS face day to day. She thanked all the contributors and advised them what they accomplished will help the ALS Association who will help those suffering with the disease. Her grandfather received a motorized wheelchair from the ALS Association, and now her grandmother can walk beside her husband instead of behind him.

The ALS Nevada Chapter has already utilized more than $3,000 of the funds raised by Nitsa to purchase aids for daily living (ADL’s). These items such as special eating utensils, special light switches and long-handled bath sponges will be given to other ALS patients.