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Isabel and Anabel Stenzel, authors, patient advocates and healthcare providers, will provide a personal and professional overview of living with cystic fibrosis, the most common life-threatening genetic disorder in Caucasians. This discussion will include the clinical aspects of the disease, including the genetics, pathophysiology and current management of the disease, showing how medical advancements have increased life expectancy and quality of life for patients. In addition, the speakers will discuss the psychosocial aspects of living with CF, including coping with chronic illness, the impact of illness on relationships, the gift of a support network, and the wisdom learned from illness. Lastly, the speakers will address one of the most transformative modern medical miracles- organ donation and lung transplantation for cystic fibrosis. The twins will share about their global advocacy work to increase awareness about cystic fibrosis and organ donation, inspired by their memoir and documentary film.

Isabel Stenzel Byrnes and Anabel Stenzel, 40, are authors and patient advocates from Redwood City, California. Both are Stanford University graduates and have Masters degrees from the University of California, Berkeley. They have worked with families affected by cystic fibrosis (CF) for 20 years. Isabel is a medical social worker at Lucile Packard Children's Hospital. Anabel has been a genetic counselor at Lucile Packard Children's Hospital for over 14 years, helping families impacted by genetic disease. Anabel serves as a Board member of Cystic Fibrosis Research, Inc. and Isabel serves on the Ethics Committee for the United Network of Organ Sharing (UNOS). Both twins volunteer for numerous CF and organ donation groups. After a lifetime of challenges from cystic fibrosis, Anabel received two double lung transplants, at the age of 28 and 35; Isabel received a double lung transplant at the age of 34. Their memoir, "The Power Of Two: A Twin Triumph over Cystic Fibrosis" was published by the University of Missouri Press in 2007, with a subsequent Japanese edition released in Japan in 2009. The twins have become public speakers and global advocates for cystic fibrosis awareness and organ donation. Their work has inspired a documentary film also called "The Power Of Two," which examines the CF and transplant experience in the USA and in Japan. The film is currently being shown nationwide. In their free time, Isabel and Anabel enjoy hiking, swimming, backpacking, traveling and spending time with their husbands, family and friends.

 

The Café Scientifique was co-sponsored by Montana INBRE and Montana State University COBRE programs.