2013 Participants

For fifteen years, Jenni has been on a quest to gain relief from her pain and fatigue. In 1997, at the age of twenty-five, doctors diagnosed Jenni Prokopy with fibromyalgia. Her pain is intermittent: there are days when the pain is all over, but mild. Other days, the pain is so intense she cannot work or socialize. To cope, Jenni uses many therapies, both western and complementary, to bring her physical relief and emotional balance. She even created ChronicBabe, an online resource for young women living with chronic illness that empowers and supports a community struggling to find acceptance and answers. She is finding ways to see beauty and joy in life... Read More >

Jenni Prokopy
Jenni Prokopy

Photo by Elizabeth McQuern photography

It has been over a decade since a work accident left Radene Marie Cook with extensive back injuries and victim to the ‘fail first’ policies of her workers’ compensation. After four years of inadequate care, the degeneration and damage to her body was severe. She had adhesive arachnoiditis in her low back and neck, central pain syndrome, cauda equina syndrome and severe epidural fibrosis. While her pain is still present today, she feels following a multi-modality treatment regimen with her new private insurance brings her needed relief and allows her to make a new life for herself... Read More >

Radene Marie Cook
Radene Marie Cook

Sandy Do lives with a wide variety of chronic pain disorders including a rare eye pain condition called corneal neuralgia/trigeminal ganglionitis. She has Raynaud’s phenomenon, postural orthostatic tachycardia syndrome (POTS), along with bone and joint pain of unknown origin. Her chronic complicated pelvic pain is comprised of four different conditions: interstitial cystitis, vulvodynia, pudendal neuralgia, and myofascial pelvic floor pain. She hurts everywhere and yet she has hope that one day she will feel better... Read More >

Sandy Do
Sandy Do

On April 26, 2012, Julie Dye was diagnosed with uterine carcinosarcoma, also known as malignant mixed müllerian tumors (MMMT), a rare and highly aggressive cancer. After undergoing a hysterectomy and a lymphadenectomy, where surgeons removed 32 lymph nodes from her pelvic and aortic regions, Julie underwent six grueling cycles of chemotherapy. Today, she is cancer-free and continues to focus on healing. She is working on making the emotional and mental switch from cancer patient to cancer survivor... Read More >

Julie Dye
Julie Dye

Dennis Kinch’s chronic back pain began over two decades ago after twisting his back moving a freezer. Then in 2001, doctors diagnosed him with ankylosing spondylitis and Paget’s disease. There are no known treatments or cures for these rare diseases, and all movement hurts. He feels pain along his entire spine from his hips up to his eyes. His thoracic spine is covered with metastatic lesions that are weakening the bone, and the interior of the bone is malformed, affecting nerves and muscles. Yet Dennis will not give up. In 2005, he walked the entire length of Route 66 to raise awareness about chronic pain... Read More >

Dennis Kinch
Dennis Kinch

At 42, Gina Libby has lived with chronic pain for more than 20 years. Despite a diagnosis of severe scoliosis as well as neurological impairment of both legs and two dropped feet, Gina refuses to let pain stop her from making an impact. She is on the frontlines of pain advocacy, using her experience to influence health care policy and teach others... Read More >  

Gina Libby
Gina Libby

Nicole Spink has been living with the chronic neurological syndrome, reflex sympathetic dystrophy, since she was ten. Over the past eight years, the disease, which began as a sprain to her inner left ankle, spread leaving her wheelchair bound and depressed. It took a long time for Nicole to realize fighting treatments only hurt her chances of walking again. Since her epiphany, she has taken positive steps to move her foot. It is now her mission to create more awareness about invisible diseases... Read More >

Nicole Spink
Nicole Spink

On June 11, 2006, Michaela O’Connor experienced an extreme, sudden pain along the right side of her face. Three months later, doctors diagnosed her with tic douloureux, more commonly known as trigeminal neuralgia (TN). Michaela has a rare form of the disease, as the pain and severity never cease. Anything touching the right side of her face, whether be a strand of hair or the wind, is agonizing. She admits it is challenging not to let pain control her. Yet she makes it a priority to focus her energy on what she still can do... Read More >

Michaela O’Connor
Michaela O’Connor

Julian Phillips has battled reflex sympathetic dystrophy (RSD) for over 30 years. This neurological and chronic pain disorder causes the nerves in the body to misfire sending constant pain signals to the brain. He has endured numerous injections, underwent several surgeries, including one to remove his ulna nerve and blood vessels from his ring finger, as well as amputating his finger. Although he suffers every day, Julian knows he can make a difference for others. He is a fighter, who despite receiving minimal pain relief, refuses to let his disease rule his life... Read More >

Julian Phillips
Julian Phillips

Eighteen-year-old Mary Currall lives with thirteen of the diseases and disorders on the National Organization of Rare Disorders list including Chiari malformation, postural orthostatic tachycardia syndrome (POTS), HLA-B27 positive enthesitis related spondyloarthropathy, Tourette’s syndrome and mitochondrial disease. The diseases affect every aspect of her life. Yet Mary refuses to let pain or fear rob her of her dreams. Instead, she has found meaning in her suffering, believing her pain can help heal the world... Read More >

Mary Currall
Mary Currall