The color red always reminds Sarah Caldwell of her father, the late Jim Caldwell.
Red was Jim’s favorite color, the color of his alma mater, Cornell University, and the color associated with amyotrophic lateral sclerosis (ALS), the disease that ended his life at age 56.
Jim was diagnosed with ALS in June 2012.
A progressive degenerative disease, ALS destroys motor neurons that are responsible for signaling impulses for muscle movement. As muscles stop receiving signals to move, they atrophy, harden and eventually become paralyzed.
People in the final stages of ALS often lose the ability to walk, talk and communicate.
So it is fitting that Sarah, a 16-year-old Falmouth High School junior, has been employing those actions in her mission to advance ALS awareness and support initiatives to find a cure.
In September, Sarah formed a team of more than 200 people to participate in the 3.5-mile Walk to Defeat ALS in Portland.
She inundated social media outlets, slapped posters up all around town and enlisted the help of her school community to create awareness.
In just 30 days, the team raised $23,000 to benefit the Northern New England Chapter of the ALS Association and research; the team also earned the distinction of being the top fundraisers for the event.
The work attracted the attention of big-name sponsor Chobani yogurt, and local media outlets who interviewed Sarah.
Jim’s death in October 2013 only strengthened Sarah’s resolve to keeping pushing for a cure.
“When my dad died, I made it my mission to carry on his legacy and to stay involved in the quest for the cure,” said Sarah. “No person should ever suffer like he did. ALS is one of the most underfunded diseases, yet it has a death rate of 100 percent. The more people that know about it, the more likely funds will be donated to find a cure.”
Sarah’s passion to educate others about the disease led her to write an essay detailing its horrific effects.
The composition earned her a Prudential Spirit of Community Service Award, the nation’s top youth volunteering honor, for her work to raise awareness of ALS.
The award includes an engraved silver medallion, a $1,000 scholarship and an all-expense-paid trip to Washington, D.C., in May, where student winners representing the 50 states and the District of Columbia will be recognized, tour historic places and meet with dignitaries.
The honorees also will have a chance to become one of five national-level winners to receive a gold medallion, a $5,000 scholarship and a $5,000 cash award to be donated to the cause of their choice.
“I cannot begin to describe how grateful I am to have been presented with this opportunity,” said Sarah. “This award has the potential to bring a lot of attention to ALS work. I’m so excited for all the possibilities that could arise because of this.”
As an added bonus, the ALS Association’s national conference is set to begin in Washington on the final day of Sarah’s visit; she hopes to be able to attend.
Sarah spoke of the mix of emotions she experienced upon learning of her father’s diagnosis and how being sidelined by an injury of her own changed the way she viewed life.
“I used to take a lot of things for granted and was pretty wrapped up in my own little world,” said Sarah. “Then, right after my dad was diagnosed, I suffered a severe concussion that forced me to stay home with him for nine months. I was frustrated at first.
“But then it hit me that I was going to get better, but my father would not. My injury turned out to be a blessing in disguise because it gave me a chance to spend more time with him.”
Sarah’s recovery process also challenged her to break out of her personal comfort zone.
Before her injury, Sarah found it difficult to talk about her father’s illness with others, but as she watched him fight to stay healthy, it strengthened her resolve to speak on his behalf.
“My dad often said, ‘I will not stop doing things until I absolutely have to,’ and ‘you have to keep trekking along.’ ”
Last September, Jim Caldwell was there to see Sarah and her team arrive for the benefit walk decked out in red T-shirts and red wristlets emblazoned with “Jim’s Red Trekkers. I walked to defeat ALS.”
Jim died just one month later.
Last week, Sarah was honored for her ALS work during a special Falmouth School Board meeting.
Falmouth High School Principal Gregg Palmer praised Sarah’s tireless resolve and sense of savvy in using the Prudential award as a platform to further her cause.
“Sarah gets that this is a very prestigious award, but she is on a mission to inform others about ALS and sees this more as a stepping stone on that journey and a tool she can use to reach a wider audience,” said Palmer.
“Sarah is the type of person I most respect and admire in the world. She has the capacity to take a sad moment in life and turn it into a reason to reach out and help others. She is always using the moment to help further the cause. That is why she is the state winner of this award,” Palmer said.
Moments later, Sarah provided a practical example of Palmer’s sentiments.
After delivering a few remarks of her own, Sarah gave each of the school officials one of her latest ALS awareness tools: red wristlets featuring the new mantra: “Keep calm and trek on.”
Deborah Sayer can be contacted at 791-6308 or at: