June Volunteer of the Month
Father John Wagner
Like words from a Christmas hymn, Father John Wagner regularly provides tidings of comfort and joy. Even after a diagnosis of ALS, John Wagner, or Father John as everyone at the Chapter calls him, continues to be a very giving man, which is why we are proud to honor him as our June Volunteer of the Month.
At the start of the COVID-19 pandemic, people were looking for signs of hope and positivity. There were no in-person visits or events. ALS families are especially vulnerable to COVID-19, so it was critical to protect the health of people with ALS. When the Chapter needed hope, we turned to Father John, who wrote a special Easter message in 2020 that could appeal to people, and especially families living with ALS, of all faiths.
That positive energy seems to come easy to Father John, but it also comes in the face of a very challenging disease.
In 2015, Father John was dealing with many classic signs of an Upper Motor Neuron disease. He was a patient of Dr. Glenn Mackin, the Director of The ALS Association Recognized Treatment Center at Lehigh Valley Health Network (LVHN). Dr. Mackin gave Father John a working diagnosis of PLS, a form of ALS. At the time, Dr. Mackin was dealing with his own personal health challenges, and, as Father John’s further tests provided worrisome results, he anguished over giving any further diagnosis to a man who had become a friend.
Four months later, Father John received his formal diagnosis. The care he received from Dr. Mackin in those early days was humbling and compassionate. In 2018, when Dr. Mackin received the Flame of Hope for ALS Care at the Chapter’s Annual Dinner, Father John was part of the presentation to honor his friend. Sadly, due to his declining health, Dr. Mackin was unable to attend in person and passed away just days later. To this day, Father John keeps Dr. Mackin’s wife and daughters in his prayers and he expresses tremendous gratitude for the care he receives at the ALS Treatment Center.
Following his diagnosis, Father John formed a strong connection with Chapter Social Worker Wendy Barnes and the entire Support Group at LVHN. He often recounts how the members of the Lehigh Valley Support Group help him by sharing their successes and failures and they also benefit from his wisdom and good nature.
Father John can provide that comfort and support not just through his personal experience with ALS, but through a life well lived as a civil engineer, borough manager, and clergy at several Episcopal Parishes throughout the Episcopal Diocese of Bethlehem. In conversations, Father John is happy to talk about his city planning experience, which includes planning for airports and other infrastructure.
That willingness to speak openly is what makes Father John such an effective Chapter advocate and spokesperson. His first volunteer involvement with the Chapter was at the 2016 Lehigh Valley Walk to Defeat ALS. He volunteered giving out materials to teams and helping them have a successful walk. Two years later, Father John cut the ribbon to kick off the event alongside State Senator Pat Browne.
Months before he cut the ribbon, Father John introduced Senator Browne at a press conference in Harrisburg as part of ALS Advocacy Day. Over the years, Father John has forged important relationships through ALS Advocacy, meeting with multiple legislators at the local and federal level, including Congresswoman Susan Wild. In 2019, Senator Browne helped Father John give the invocation to the State Senate, a moment of personal pride for Father John and one of important recognition for the ALS cause.
“I truly believe that each of us should fully use the gifts we have been given,” said Father John about his active role in advocacy. “I can form relationships fairly quickly and do not shy away from public speaking. I know that speaking persuasively with groups can make many folks’ blood run cold. Since that is one of the many areas in which I have been gifted, I try to use that gift.”
Another way that Father John uses that valuable gift is through public awareness. He has spoken on the Chapter’s Talk to Defeat ALS podcast and has been featured in multiple media appearances, including for the 2021 Rare Disease Day on WFMZ-TV. While ALS often takes away a person’s ability to speak, Father John’s symptoms have not included loss of speech, so he chooses to use his voice to lift up others who are facing ALS to provide hope and support. It has been difficult for people to find that positivity during a terrible pandemic, but Father John finds a way. “The price of admission to being a person with ALS or an ALS caregiver is catastrophically high,” he said. “However, we still have folks to love, hugs to give and receive (post COVID of course), and lives to live! We need to get out there, live those lives, help others through things like ALS advocacy, and continue to live our lives to the fullest. Our lives were gifted to us, let us gift our love as long as we have breath.”
Through the Walk to Defeat ALS, advocacy, media appearances, podcasts, writings, and more, Father John is constantly gifting his love to others. Yet for all the thanks that we give to him, he cannot miss a chance to offer thanks to others.
“Having an opportunity to meet and work with Doctors Walsh and Romano, co-directors of the ALS Treatment Center at LVHN, has been a special moment. I could not deal with the number of medical appointments I need each quarter without this multidisciplinary clinic,” Father John said. “Being there for Dr. Mackin and his beautiful family, as well as members of our support group, has meant so much. I am grateful to greet newly diagnosed patients into the Support Group and see their priceless reactions when they find out that I am more than five years post-diagnosis and still moving and that my voice is still strong and understandable.”
Thank you, Father John, for sharing your gifts, your joys, your time, and your love with all of us, through good times and bad, as we work together to end ALS.