Natalie woman helps lead Walk to Defeat ALS in mother's honor
BLOOMSBURG - A Natalie woman is helping to organize an event to raise money to fight the disease that took her mother's life.
Sharon Cichon and five others are serving as co-chairpersons for the fourth annual Jorge's Walk to Defeat ALS, set for 10:30 a.m. Saturday at Town Park.
The two-mile walk and related events will raise money for the Greater Philadelphia Chapter of the ALS Association, which studies the cause and cure of Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig's Disease. The association also lends motorized wheelchairs and speech devices at no cost.
For Cichon, the fight against the disease is personal. Her mother, Roseann Nagy, died from ALS Jan. 4, 18 months after she was diagnosed.
"I can vividly recall the day my mom called me and told me about the diagnosis," Cichon said. "I was driving and needed to pull off the road. I remember asking the neurologist how sure he was that she had this, because we were all in denial."
ALS is a progressive disease that affects the nerve cells in the brain and spinal cord. When the motor neurons that control muscle movement throughout the body die off, the ability of the brain to initiate and control muscle movement is lost.
"Although each case of ALS varies individually, people who are diagnosed with this disease gradually lose their ability to walk, talk, eat and swallow," Cichon said. "They are no longer able to move their arms and legs, and in most cases, their body is rendered motionless, leading to the person being paralyzed, and eventually death."
Cichon and her family experienced that heartbreaking scenario with her mother.
Without mechanical ventilation, the average life expectancy of a patient at the time of diagnosis is two to five years. Nagy survived 18 months after being diagnosed at age 71.
In addition to being a co-chair, Cichon also captains "Team Roseann's Rainbows" for the event.
"The one thing that ALS did not take away from mom was her smile," Cichon recalled. "She continued smiling when someone entered the room and always remained determined and strong. It was because of that inspiration that we came up with the team name. She will always be the rainbow that brightens our day with a wonderful memory."
There is only one drug approved for ALS treatment, but it doesn't cure the disease, only slow its progression by three months, and its extreme cost makes it unaffordable impossible for some people.
The Bloomsburg walk started in 2010 after Rosalba Snyder, now event chairwoman and founder, lost her father to ALS.
"It is because of my family's personal experience with ALS that I have gotten involved. My goal, and the goal of anyone affected by this, is to educate more people about the devastation this disease causes, and how badly a cure is needed in order to kill ALS, rather than have it kill others," Cichon said.
Anyone interested in taking part in the two-mile walk can register online at www.alsphiladephia,org, or come to Town Park starting at 9 a.m. to register. Those attending don't even have to walk as there will be a DJ providing entertainment, free food, 50/50 drawings and raffles for donated items.
Joining Cichon as co-chairs are Mandy Podehl, Roy Snyder, Jennifer LaRegina, Stephanie Greene and Kathy John.