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A Mother’s Courage Opens Patients as Partners Event!
December 3, 2014
We are so pleased to welcome, Pat Furlong, Founding President and CEO of PPMD to the Patients as Partners event. Pat will open the program with the patient view on participating in clinical trials. Patients as Partners is dedicated to:
1. Understanding and incorporating the patient’s voice in designing clinical trials
2. Vastly improving the patient’s entire experience in clinical trials. The 2nd annual conference takes place March 16-17 in Philadelphia.
This scientific crusader has helped create paths for so many patient voices across so many disease areas. We are delighted to share Pat’s story from the PPMD website:
When doctors diagnosed her two sons, Christopher and Patrick, with Duchenne in 1984, Pat didn’t accept “there’s no hope and little help” as an answer. Pat immersed herself in Duchenne, working to understand the pathology of the disorder, the extent of research investment and the mechanisms for optimal care. Her sons lost their battle with Duchenne in their teenage years, but she continues to fight—in their honor and for all families affected by Duchenne.
In 1994, Pat, together with other parents of young men with Duchenne, founded PPMD to change the course of Duchenne and, ultimately, to find a cure. Today, Pat continues to lead the organization and is considered one of the foremost authorities on Duchenne in the world.
Along with leading PPMD, Pat speaks about Duchenne and related topics at conferences each year worldwide and is an active Board member with the Genetic Alliance and the Muscular Dystrophy Coordinating Committee, U.S. Department of Health & Human Services. She is also a committee member on the Collaboration in Education and Test Translation Program; and serves on the data safety monitoring board for both the Rare Diseases Clinical Research Network and Cooperative International Neuromuscular Research Group.
Pat graduated from Mt. St. Joseph College in Cincinnati, Ohio with a BS in Nursing. She attended Graduate School at Ohio State University. While attending Ohio State, Pat spent most of her time in the Medical Intensive Care Unit. After marrying Dr. Tom Furlong, Pat ran the Renal Dialysis Unit and Patient Education Center at Akron General Hospital. With four children, Pat continued her career on a part-time basis, teaching patient education classes at Middletown Regional Hospital.
Pat has two daughters and her perseverance is in honor of her two sons, Christopher and Patrick, who continue to motivate her efforts.
Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Its mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion. Duchenne is the most common fatal, genetic childhood disorder, which affects approximately 1 out of every 3,500 boys each year worldwide. It currently has no cure.
For more information about PPMD, visit EndDuchenne.org
For more information about the Patients as Partners event, visit www.theconferenceforum.org