My mother, Connie (Vollert) Carolfi, died of pancreatic cancer in 1999 at the age of 44.  Originally from Vesper, WI and raising her family in Wisconsin Rapids, she enjoyed the small-town joys of the world: gardening, sewing, craft-making, bowling, playing volleyball, camping, and frequently visiting her mother and 12 brothers and sisters.

Once diagnosed, there were very few resources for our family – every Cancer Hotline we called had neither information nor hope. The statistics were horrible – only 4% of those diagnosed live 5 years. My family and I couldn't stand the thought of losing her in 5 years – my younger sisters and I were only 20, 16 and 13 years old!  Our lives had just begun and we needed her guidance. Her medical team gave her six months to live – and her battle lasted exactly that long.

Rather than travel to some long dreamed-of locale, learn to salsa dance or anything else dying people might try, she set about doing all the wonderful things a mother does for her family. She made dinner and folded laundry, vacuumed and washed the dishes – making life bearable for a husband and three daughters whose worlds were about to be turned upside down.

She tried to forget about the disease – but as it became more and more debilitating, she set her sights on finishing one final project – she made baby quilts for her future grandchildren. She knew she'd probably not live to meet them, but therein lay the hope her medical team failed to foster.

Now nine years have passed, and I am extraordinarily committed sharing the support and hope the Pancreatic Cancer Action Network now provides to patients and caregivers. I joined the Pancreatic Cancer Action Network Affiliate of New York, NY in 2003, and started the Madison, WI Affiliate in 2007.  I've traveled to Washington DC to lobby for more federal funding for cancer research, and written letters to oncologists urging them to share this resource with their patients. The PALS program, for example, helps patients and families understand the diagnosis and treatment options in order to make informed choices together with their healthcare teams. PALS offers disease and treatment information, individualized clinical trials searches, and support resources, including peer-to-peer matches in their Survivor and Caregiver Network.

Approximately 37,170 people will be diagnosed with pancreatic cancer this year in the United States and 33,370 people will die from it. The number of Americans diagnosed each year of pancreatic cancer continues to rise unlike other leading cancers where an investment in early detection has led to a decrease in cancer incidences. The country's investment in cancer research over the last 20 years has led to a slight drop in 2006 in overall deaths due to cancer. Pancreatic cancer, however, has not experienced a drop in its death rates. The lack of progress in pancreatic cancer proves that we must continue to make federal funding of cancer research a priority.  

Our family has experienced three deaths due to pancreatic cancer.  Data does exist for families of Ashkenazi Jewish descent, but we do not fall into that category and our genetic connection is still a mystery. 

While the fight for more funding and genetic research wages on, my goal is to share some hope with other families facing this horrible disease.