When Karolina Fraczkowska meets with a member of Congress to talk about ALS, she always starts with, “My Tommy.”
For over a decade, Karolina has been an energetic advocate for the ALS cause in loving memory of her husband, Tom Phelan. It is a journey that includes generations of family members, who are united in advocacy.
Karolina’s ALS story started in August, 2012. Tom’s initial symptom was twitching in his right biceps muscle. The twitching then began to spread to his other arm and his back. In the ensuing weeks and months, he also developed a slurred speech.
After many medical tests and visits to different doctors, Tom was officially diagnosed with ALS in January 2013.
“I knew about ALS before the diagnosis,” remembered Karolina. “I knew that it was the most awful disease and that there is no cure. I could not say ‘ALS’ because I could not admit that it could be that.”
Karolina and Tom are fighters. Tom was a veteran who had served in the United States Air Force. In the weeks after his diagnosis, Tom wanted to use his story to make an impact for others. He participated in ALS Advocacy Day in Trenton, NJ, encouraging lawmakers to fund ALS care in the state budget.
In May of 2013, Karolina, Tom, and their daughters Emma and Sophia attended ALS Advocacy Day in Washington, DC. They met with members of Congress from New Jersey and pushed for greater funding for ALS research. Their story resonated with elected leaders at the time like Congressman Rush Holt, who championed their cause.
Unfortunately, Tom’s symptoms progressed rapidly. They faced new challenges every month. Karolina recalls that it felt like they were always playing catch up with ALS. As soon as they felt like they had one symptom under control, something new happened that made his condition worse.
Karolina stopped working in November 2013. Her mom came to the house to help care for Tom as well. They had a caregiver for two hours every day in the home. While Tom’s health deteriorated, Karolina still had to care for three children.
“We had a wheelchair, a stairlift, ramps, feeding tubes, everything to help Tom,” Karolina said. “Our house started to feel like a hospital. But our children saw how we care and love each other no matter what.”
Tom Phelan passed away from ALS in June 2014, the same week as the Jersey Shore ALS United Ride. It was less than 18 months after his diagnosis. Tom left behind three children, aged 10, 7, and 3, including his son Zach.
The Phelan family signed up for their first ALS United Ride in 2013. Phelan’s Phighters zoomed through the finish line in Wildwood, NJ, with energy and optimism to raise money for ALS research. Through the Ride, they made new friends and felt like part of the wider ALS community.
When Tom passed away on June 13, on the Friday before the 2014 Jersey Shore ALS United Ride, Karolina was determined to get on her bike and ride in his memory. Her strength and resolve were an example to everyone at the Ride that day. Her Tommy was on her mind and in her heart as she pedaled with her friends and family.
After Tom’s passing, Karolina committed to using their story to lift up others who are impacted by ALS. She recognized how caring for a loved one with ALS took so much of her time and energy and now she could use that time and energy to help others who were currently facing the same challenges that her family did. She continued to visit Washington, DC, with Emma and Sophia each year to push for greater funding for ALS research. Their efforts were essential to gaining more supporters for legislation such as the ALS Disability Insurance Access Act, which passed after years of advocacy from families like the Phelans.
In 2017, Congresswoman Bonnie Watson-Coleman recognized Emma and Sophia Phelan for their ALS advocacy in memory of their father. The girls told their Congresswoman about what they learned from their father’s battle and how they wanted to use their story to help others. In the years that followed, Emma and Sophia took what they learned and put it to use in science and engineering in their own further college education.
As Karolina continued to bring her family on her ALS advocacy journey, she made more friends along the way. She became especially close with John and Loretta Russo, who are frequent advocates in Washington, DC. John was diagnosed with ALS at the same time as Tom and the two families have been close ever since. The Russos have seen Karolina’s children grow up and Loretta bonds with Karolina over the role of being a caregiver.
It has now been over a decade since Tom Phelan passed away. Now Karolina is adding to her advocacy with her youngest child, Zach. They attend advocacy visits together and Zach uses his own programs to create fun and educational videos about ALS and lobbying members of Congress. He also helps his mom with her own videos about science. When ALS United Mid-Atlantic opened a new office in 2024, Karolina and Zach visited the open house and Zach made videos to highlight the work of the care team. When people see Zach, they quickly see how much he looks like his dad.
Since 2012, Karolina Fraczkowska has kept her Tommy in her heart as she does everything in her power to make a difference for the ALS cause. “This disease took my wonderful husband from me,” Karolina said. “But I cannot let ALS have the last say. I will always do advocacy and fundraising to beat ALS.”
Thank you, Karolina, for being a champion for those impacted by ALS. Your energy inspires and motivates the work we do at ALS United Mid-Atlantic as we work to end ALS in memory of Tom and in honor of all ALS families.