Volunteering can be powerful, especially when you are working to lift up others. As a caregiver, organizer, and advocate, Christie Cozzie-Nester is committed to making a difference for those impacted by ALS while showing others just how powerful they can be too.
Christie Cozzie-Nester worked in healthcare in various capacities since she was 15 years old, but she did not interact with anyone living with ALS until she was in her mid-30s and a family friend was diagnosed with the disease. Surprisingly, even in her time working in hospitals, she had not experienced ALS personally, though she had learned about it in nursing school.
In 2022, Lenny Rafalko was searching for a caregiver. Lenny’s ALS symptoms continued to progress and his care needs were growing. He was looking out for his own health and the well-being of his wife Marda. Christie had been working for a mutual contact of Lenny’s and learned about the opportunity. The two quickly formed a bond and she became his full-time caregiver.
Lenny depends on Christie and his team of caregivers for many needs. She has helped with many aspects of daily living like cleaning and laundry and makes sure that he is safe and comfortable in the home. During her time in his home, Christie makes sure that Lenny can be himself, that he has friends who care, and that he can live the best life possible, even with the growing challenges from ALS.
As Christie continued to help Lenny, she became connected to the wider ALS community. Lenny lives in Pennsburg, PA, and Christie started to connect with other local ALS patients, including Sarah Brendle, who Christie had actually met years before through Sarah’s business Sassafras Originals.
In late 2022, Lenny talked with Christie about a “Bucket List” of activities that he wanted to accomplish. One of his top ideas was to set up a charity golf outing to support other ALS families. Lenny loved to golf and he already had friends in the community who knew how to organize such an event, so it seemed like the perfect time to try. Christie, Lenny, Marda, and Jessie Meier, social worker with ALS United Mid-Atlantic, held their first planning meeting in February of 2023 and the event quickly gained traction.
The 1st Annual Lenny’s Light Scramble to Defeat ALS was held on June 23, 2023, at Butter Valley Golf Course in Bally, PA. Lenny’s family, friends, and church community all came out to support him, as they raised $17,500 to benefit ALS United Mid-Atlantic, The ALS Treatment Center at Lehigh Valley Health Network, and local families impacted by ALS.
Almost as soon as the first event ended, Lenny started to plan for the next outing. The 2024 Lenny’s Light Scramble surpassed the success of the first event, raising over $20,000, with new sponsors and volunteers helping in Lenny’s honor.
Lenny created the event because he saw how critical caregiving was for him and he wanted to help others who did not have as many resources. Christie’s example was one that he hoped others could benefit from as well. Her support for Lenny drives him to help others.
In addition to event organizing, Christie has been an active volunteer through advocacy and awareness. Over the past two years, Christie has joined Lenny, sometimes with his beloved dog Norm, to bring attention to his story and his events by appearing on WFMZ TV with hosts Bo Koltnow and Karin Mallett. She also promotes their ALS activities on social media and through local organizations like ProjectLIVE Upper Per in the Upper Perkiomen Community in Montgomery County, PA. Christie is regularly sharing Lenny’s story to bring more attention to the ALS cause.
“Caregiving is not for the faint of heart,” said Christie. “there are days that will be difficult for you and the person with ALS and you have to remind yourself that it is truly an honor to be in someone else’s home and to share in their lives and vulnerability. You have to try your best to treat them with the same compassion and understanding that you would want yourself and for your loved ones. Most importantly, be flexible and allow them to express their needs and adjust accordingly.”
One of Christie’s favorite and most empowering activities is ALS Advocacy. In 2023, Christie participated in ALS Advocacy Day in Harrisburg, PA, to talk with legislators about the importance of funding ALS care. She wore a special shirt honoring Lenny and shared his story with all who would listen, impressing lawmakers and other advocates with her empathy and deep knowledge of the realities of ALS.
In 2024, Christie returned to Harrisburg, this time joining Sarah Brendle, as they teamed up to talk with legislators to support issues that are important to the ALS community. “Meeting with legislators like Rep. Bryan Cutler and Rep. Kyle Mullins is always a bright spot because they understand the devastating impacts of ALS and it feels like family,” said Christie. “To know we are doing this in hopes that future generations won’t have to is a driving force for me and the impact we have is something I truly can’t put into words.”
Volunteering with ALS United Mid-Atlantic has given Christie invaluable friendships and allowed her to make an impact in ways she would have never imagined just three years ago. She enjoys working with Lenny, Marda, and Jessie in every way possible. Jessie regularly reaches out to Christie to help other people with ALS in the area and to connect them with the proper caregivers. As a result, Christie was able to be a caregiver for another person with ALS through Jessie.
Jessie also has helped Christie participate in other local events, including the Lehigh Valley ALS United Walk and Dance Your ALS Off. Lenny’s Light is regularly the number one fundraising team for the Lehigh Valley ALS United Walk and Christie is always honored to join Lenny and his friends.
“Christie is truly one in a million and such an angel in the ALS community,” said Jessie Meier, MSW, LSW. “I have had the privilege of meeting Christie as one of Lenny’s amazing caregivers. But she is so much more than just a caregiver – she is an advocate, a fearless leader, and always willing to lend a helping hand, a smile, and her heart to help anyone impacted by ALS. She has cared for other families living with ALS and is deeply committed to always going above and beyond to help others. She lights up every room she walks into and has the incredible ability and strength about her that is so inspiring and infectious. Thank you, Christie, for ALL that you do!”
All of us at ALS United Mid-Atlantic are honored to know Christie and work with her to support local families impacted by ALS. She truly understands the meaning of caregiving. We are proud to recognize her as our July 2024 Volunteer of the Month.
Click here to learn more about how you can be an ALS United Mid-Atlantic volunteer.