No Longer Alone in Their Fight
Kidney Disease Patients Inspire Walk
“All I can say is thank God for internet,” said Rick Clarke, his voice breaking slightly in front of hundreds of orange-shirted supporters at Cooper River Park in Pennsauken NJ. “Because without the Internet I would not have found NephCure.”
Rick survived for 20 years with a transplanted kidney donated by his brother, Michael, but several years ago the Nephrotic Syndrome that destroyed his native kidney attacked the functioning kidney. It seemed as though Rick and his family had to face the ugly disease once more. And once more, he felt alone.
But on Sunday Oct. 5, Rick and his family found themselves awash in a sea of support at NephCure’s South Jersey Step Forward for a Cure walk. Because he discovered NephCure on the web, Rick was face-to-face with a half dozen other Nephrotic Syndrome and FSGS patients from South Jersey, and hundreds of others pushing for a cure.
Rick was one of seven individuals who attended the event that is currently coping with Nephrotic Syndrome and FSGS. Other patient attendees included the following:
- Christopher Rienzi, age 37, of Haddon Height, has lost four kidneys over the last two decades to FSGS. He received kidneys from his mother, father, brother and a cadaver.
- Michele Copeland, age 28, of West Deptford, was diagnosed with FSGS 10 years ago and went on dialysis until she received a new kidney in 2004. While she was still in the hospital recovering, the disease returned to attack the new kidney.
- Daniel Palumbo, age 20, of Southampton was first diagnosed in 2003 with Nephrotic Syndrome. Daniel, now a college student, eventually lost kidney function to FSGS, His father, Tom, donated a kidney that was transplanted into his son this past August 7. Unfortunately the disease came back two weeks later. He now undergoes special treatments three times a week to try to save the new kidney.
- Danielle McDevitt, age 17, of Cinnaminson suffered from a rapidly progressing FSGS when she was 11 and soon her kidneys were destroyed. Her mother, Cathy donated one of her kidneys. Unfortunately the disease came back shortly after the transplant. Danielle underwent 30 difficult plasma apheresis treatments and eventually recovered; she is now a senior at Cinnaminson High School.
- Autumn Conaway, age 17, of Burlington City was diagnosed with FSGS when she was 10 years old and the condition caused various physical symptoms, including fatigue and swelling. Multiple medications have been able to alleviate the effects of FSGS sufficiently to allow her to enter college.
- Christine Antosh, age 24, of Cinnaminson was diagnosed with FSGS at the age of 16. She was told that her kidneys would fail within five years. Christine has amazed the doctors having still maintained kidney function.
The walk, one of six in the Pennsylvania-New Jersey region this Fall, collected some $30,000, all aimed at supporting NephCure’s exclusive mission to raise funds for scientific research into Nephrotic Syndrome and FSGS.
Music greeted the crowd as it showed up for registration and early-morning food. A clown, face-painter and balloon man entertained the youngsters. Before the walk began, each of the kidney patients supporting NephCure spoke about their trials with their disease.
One special celebrity on hand was Kylee, 3, daughter of Natalie Friess, and a newly-diagnosed Nephrotic Syndrome patient. Kylee’s grandfather, Mike Friess, said Kylee was diagnosed this past summer. The family was told about NephCure by a health provider in Minnesota and decided to attend the walk.
“It’s great to not feel alone,” said Friess.
Cutting the ribbon to start the walk was NJ State Senator Fred H. Madden Jr., of Gloucester County, who advised the crowd to work with their legislators to see government research funds.