Hopewell Township man walking 5K every day to raise awareness for rare blood cancer

HOPEWELL TWP. ― Pete DeNardis made a promise at the beginning of September: Every day until October, he would walk at least 5 kilometers along local trails and neighborhoods.

While the walk certainly has a variety of health benefits and remains an enjoyable experience in early fall, the 63-year-old Hopewell Township resident and his wife, Terri DeNardis, are also committed to these daily journeys in order to raise awareness for Waldenstrom macroglobulinemia, a rare and incurable form of blood cancer.

DeNardis, who will have lived with the cancer diagnosis for over 20 years in October, hopes these daily journeys can help spur discussions about the rare disease.

"We chose to do a 5K a day because it was a milestone for me to run a 5K with my kids a couple of years ago, and since I still work full time, the best I could do was a walk of at least 5K per day," he said. "It takes about 45 minutes to an hour each day, at least for us. And, walking 5K a day gets us to 150K for the month, or around 100 miles for the month."

According to the American Cancer Society, Waldenstrom macroglobulinemia (which can also be shortened as "Waldenstrom’s") is a rare type of non-Hodgkin lymphoma that creates a large number of abnormal proteins in the body known as macroglobulins. As a result of this increase in these proteins, the blood can become thick and affect various internal organ processes, causing symptoms such as anemia, fatigue, weight loss, enlarged lymph nodes, weakness or unexplained bleeding.

When DeNardis was diagnosed with rare blood cancer in October 2003, doctors informed him that the disease was incurable. Despite the grim messaging given at the time, the father of three continued to seek answers.

"When I was diagnosed 20 years ago, my wife and I were told to get our affairs in order, and that I only had six years to live," DeNardis said. "From that moment on, we realized that we had to take more direct control of my medical care, and we researched as much as we could about the disease."

Through his research, DeNardis found several support groups and nonprofit organizations dedicated to learning more about Waldenstrom’s around the globe. By working with these organizations, such as the International Waldenstrom’s Macroglobulinemia Foundation (IWMF), DeNardis was encouraged to seek out second opinions and university-based hospital systems that were better positioned to discuss the diagnosis.

"We learned pretty quickly that when one is faced with a rare, incurable disease, it's important to reach out to others in a similar situation, ideally with the same disease, to learn from each other and to support each other," DeNardis said. "We also learned that it's important to become educated as much as possible about your disease and treatment options, and learn about upcoming research and clinical trials."

Over the past 20 years, DeNardis has helped the IWMF in a variety of ways, such as volunteering for roles as an online discussion list manager, webmaster, social media consultant, email communication manager and annual Education Forum planning committee member. In 2021, he began to serve as the chairman of the board of trustees for the outreach group, overseeing daily activities to ensure the group maximizes the ability to support education on the disease and improve patient outcomes while searching for a cure.

One of the ways the IWMF helps raise awareness is through annual walks, with members organizing larger walks throughout the month to raise awareness and encourage donations to the nonprofit. While not every supporter walks over 5K a day like DeNardis, he says that these organized walks and bike rides across the globe have raised over $41,000 so far for this year's campaign.

For his own personal goal, DeNardis is hoping to raise $2,000 or more for the campaign this month. To help achieve this goal, he plans to host a public walk in Pittsburgh's Squirrel Hill neighborhood at 2 p.m. Sept. 24, inviting members of Western Pennsylvania and Eastern Ohio's support groups to join the fun.

Through his work, DeNardis hopes he can raise more awareness about Waldenstrom's and inspire those in similar situations that there is hope with grim diagnoses. Like in his own journey, DeNardis wants to serve as a helping hand to those in tough spots and help give back to those who helped him.

"People should be aware that the journey with a rare lymphoma has its ups and downs, as relapses can occur at any time - but it's still possible to live a full and productive life in spite of it," he said.

"The ultimate goal for any cancer patient is to find the most satisfaction out of life, out of each day, out of each breath, and that you don't have to sweat the small stuff anymore. And to hold tight to your family and true friends.  The ultimate objective is not necessarily the quantity of life you have left to live, but the quality of it."

Community members can follow DeNardis on his journey by following his online blog documenting the walks and his personal history. Those looking to donate to the campaign can also contribute to DeNardis's fundraiser online.

This article originally appeared on Beaver County Times: Hopewell Township man raising awareness for rare blood cancer