Bill O’Brien had to do something. His friend Brent Paulhus was struggling with ALS and doing nothing for Brent was not an option. For the past ten years, Bill has done more than just “something.” He has been a champion for the Chapter’s Rehoboth Beach Walk to Defeat ALS and he has brought hope to hundreds of Delaware families impacted by ALS.
Bill’s story does not start ten years ago. It starts nearly 30 years earlier when Brent and Bill worked together in Massachusetts. Bill’s military career took him to Milford, DE in the early 1990’s yet remained very close with Brent. When Bill heard that his friend had ALS, the only thing he knew about the disease was that it was fatal.
“You hear ALS, you know it is a terminal disease,” recalled Bill. “It felt like there was nothing I could do because I couldn’t just give blood or donate a kidney.”
Then, in 2009, Bill saw a newspaper article about the Rehoboth Beach Walk to Defeat ALS. He suddenly felt empowered. “I’m not a doctor or a scientist, but here was my opportunity to help” Bill said.
In the last ten years, Bill has done more than help. He has been a force for good in Delaware and volunteering for the Walk to Defeat ALS has helped make it a premier event every year.
The newspaper article cited contact information for Mary Ann Wollter, whose husband Gene had passed away from ALS. Bill connected with Mary Ann's daughter, Mary Lou, and she invited him to a Walk committee meeting where he learned about what was needed to make the event successful. First Bill focused his attention on being a Team Captain. The outpouring of support for his friend Brett up in Massachusetts made him realize the strong impact of his involvement. He quickly became more active and joined the walk committee.
Brent’s battle with ALS ended when he passed away in 2012 . He courageously lived with the disease for over 12 years.
Bill knew that it was common for teams to step back after a person passed away from ALS, but he stayed involved in memory of his dear friend, Brent.
Unfortunately, Bill would soon have a new reason to walk.
In 2016, Bill’s cousin Rob back home in Massachusetts was diagnosed with ALS. It was April Fool’s Day.
Rob and Brent had also been friends. Now they shared a bond they would have never imagined as kids. Sadly, Rob’s progression with ALS was much quicker than Brent’s and he passed away in less than two years.
“Rob’s diagnosis was even harder, because I knew what it meant. I knew what we could expect,” remembered Bill.
Bill marveled at the increased in hope and help for those living with ALS. Much of this was due to the fundraising and awareness promoted by the National Walk to Defeat ALS program. He immediately connected Rob to The ALS Association Massachusetts Chapter and three years later a team still walks in Rob’s memory in the Massachusetts Walk.
For over ten years, Bill has devoted much of his time, energy, and passion to the success of the Rehoboth Beach Walk to Defeat ALS. He promotes the Walk through radio PSAs TV appearances and doing anything that is needed to raise awareness. He secures food donations sets up the tables and materials on walk day. Bill loves his role as Walk emcee, where he kicks off the day and celebrates with everyone at the conclusion. On September 7th of this year, the Walk’s ending took on special meaning. After so much personal loss, Bill had a big reason to smile.
The Rehoboth Beach Walk to Defeat ALS was close raising a cumulative total of $1 million! Reaching this milestone was a tremendous achievement for the teams in Rehoboth Beach. As the day drew closer and the fundraising picked up, Bill knew they would reach their goal.
At the end of the walk, on a beautiful Saturday morning on the boardwalk, Bill O’Brien proudly held up a check showing that together – because of the commitment of so many dedicated volunteers for so many years - the Walk had surpassed the Million Dollar Milestone.
“We did it!” said Bill. “We were all so proud. To see the look on Mary Ann Wollter and her daughter Mary Lou's faces though? That was huge. That was a true ‘Kodak moment.’”
After over a decade of organizing and volunteering and reaching this huge goal, you might wonder if Bill is ready to step aside and take a break. But Bill is not yet finished.
“How can you stop after that?” Bill asked. “We only built up more momentum. Just wait to see what we do next.”