Even in the darkest moments of life with ALS, Lenny Rafalko has a lot of light to offer the world. Since his ALS diagnosis in 2019, Lenny has used his kindness to bring that warmth to his community and to empower others with ALS to share their light.
Before his symptoms began, Lenny had a successful career as an environmental consultant with degrees from Temple University and the University of Virginia. Lenny worked for a global organization on major projects that included the investigation and remediation of environmental contamination to land, water, and air from commercial and industrial operations.
When Lenny was diagnosed with ALS, he began to participate in group meetings and events with social worker Wendy Barnes through the Chapter’s ALS Treatment Center at Lehigh Valley Health Network. He learned about the stories of other families impacted by the disease and quickly made friends with other patients and caregivers.
Lenny’s involvement in the ALS cause was just beginning in earnest when the COVID-19 outbreak began. As group meetings went virtual and patients stayed at home out of an abundance of caution, Lenny knew that it was more vital than ever for people to make and retain connections to each other.
One of the first ways that Lenny took initiative was by starting a podcast, “Roots Radio,” with social worker Jessie Meier in June of 2020. Lenny and Jessie created the podcast as a way for people with ALS to share their stories and experiences and to promote general awareness of ALS to the public. Lenny is an ideal host because of his empathy and ability to listen and to engage in dialogue as part of the podcast. He knows how ALS can make a person feel, and it is his goal to make his guests feel special.
Lenny has also shown what makes him special by becoming a valuable advocate for the ALS cause. As visits with legislators began taking place virtually, Lenny was eager to share his story to preserve and increase funding for ALS care. “I wanted to be someone who didn’t just receive care, but who could give back,” said Lenny. “I want to make a difference in the lives of others.”
When Lenny could not physically make the trip to the Pennsylvania Capitol to share his story, his friend Christie did. She wore his “Team Lenny’s Light” shirt and spoke with legislators about how his journey has inspired her. Christie hoped Lenny’s story would inspire state legislators to fully fund ALS care, which they did once again in the state budget.
Lenny has found comfort and community through St. Mark’s Lutheran Church in his hometown of Pennsburg, PA. In 2021, once people were able to gather again, the Youth Outreach group at St. Mark’s created a team for the Walk to Defeat ALS Lehigh Valley in Lenny’s honor. The team, called Team Lenny’s Light, was one of the top fundraising teams in 2021 and 2022. The supporters from the Church took up Lenny’s fight as their own and have rallied to him ever since.
In addition to raising money through the Walk, Lenny took the opportunity to raise awareness in local media. He has appeared multiple times on WFMZ-TV to share his story and to talk about the needs of people with ALS. His goal is to not just raise money, but to provide hope and direction to others who have recently been diagnosed.
In 2023, Team Lenny’s Light and other members of the community organized a charity golf outing. The outing was called “Team Lenny’s Light Scramble to Defeat ALS” and was hosted at Butter Valley Golf Course in Bally, PA. The turnout exceeded Lenny’s expectations. The event raised more than $17,000 which directly benefited families living with ALS. Many volunteers talked about how they had to be there to support their friend Lenny.
One volunteer who especially shined through was Lenny’s wife Marda.
“I wouldn’t be here without Marda,” said Lenny. “She’s my friend and confidant and partner and caregiver. It says a lot about her that I was diagnosed with ALS in 2019 and she gave me her hand in marriage in the fall of 2021. She knew my limitations and wanted to be with me. She wanted to be my wife. That kindness and generosity and love is hard to find, and I feel very fortunate.”
The love that Lenny gets from Marda and his network of friends is the light that he continues to share with the world through awareness, advocacy, fundraising, and more. There are many ways to give back, and Lenny has made it a point to focus outward to the broader needs of the ALS community. His example continues to inspire his family, his community, and beyond.
Thank you, Lenny, for sharing your light with us and for all that you do to volunteer for all those impacted by ALS.