Friends of IPWSO improves the lives of the global PWS community by funding IPWSO’s family support, educational and scientific networking activities.
Friends of IPWSO is a United States nonprofit committed to raising funds to help those who have Prader-Willi syndrome living throughout the world.
US EIN: 82-2546968
Joan Gardner, President and co-founder. Her son, born in 1968, was diagnosed with PWS when he was 3 months old. Joan has been President of PWSA Minnesota and was organizer of the 2001 international IPWSO & PWSA(USA) convention. She is currently PWSA(USA) parent delegate to IPWSO and serves on committees of both PWS organizations. In addition, she has been a board member of Lifecore Biomedical Inc., FR Bigelow Foundation, National Association of Children’s Hospitals, Hamline University the Biomedical Research Institute, and Childrens’ Hospitals and Clinics of Minnesota.
Dr. Suzanne Cassidy, M.D., Vice-President, is a Medical Geneticist who is a Clinical Professor of Pediatrics in the Division of Medical Genetics at the University of California, San Francisco. She specialized in Prader-Willi syndrome clinically and in her clinical research for 40 years prior to her retirement, conducting specialized PWS clinics throughout her career. A founding member of IPWSO and IPWSO President from 2010-2016, she is currently on the IPWSO Clinical and Scientific Advisory Board. She is also on the PWSA(USA) Scientific Advisory and Clinical Advisory Boards. Dr. Cassidy has been a frequent speaker about PWS around the world and is widely published on the condition.
Kevin Quinn, Secretary, is the Managing Director of PMO Global Solutions, an Information Risk Management company based in Parkland, Florida, with clients across the globe. His daughter was born in 2011 with PWS and has been the inspiration for several “K’s for Katie” fundraising races. Kevin is an active organizer, fundraiser, and participant in athletic- based PWS initiatives. His wife’s family is from Bogota, Colombia, and the family focus has been to assist with awareness, information distribution, and social connection in Spanish-speaking Latin America, including a bi-annual medical and family.
Denise Westenfield, Treasurer, has an Accounting degree from the University of Minnesota. She is currently the CFO for a privately held LED lighting conversion company in Minneapolis, MN. She has over 30 years of management and finance experience. Denise is the mother of a 23 year old son with PWS. She has been serving the PWS community for over 20 years including: Director and Treasurer for PWSA(USA); and President, Vice President, Secretary and currently Treasurer for PWSA-Minnesota. In addition, she is also the head of delegation for a team of 150 Special Olympics athletes.
Tim Hearn, JD, Director & Legal Advisor, retired as Partner and General Counsel with the Minneapolis law firm of Dorsey & Whitney LLP after 36 years spent assisting medical device, pharmaceutical and software companies with raising capital, buying and selling businesses and addressing general corporate governance issues. Tim and his wife, Carol, who is also an attorney and a past chair of the PWSA(USA), have three children including a son, David, who is 27 years old and was diagnosed with PWS at the age of 4. In addition to serving as a director of the Friends of IPWSO (USA), Tim is currently in his first term as a director of the PWSA(USA). Tim holds a B.A. in American History from Brown University, and a J.D. from Harvard Law School.
Dr. Moris Angulo, M.D., Director, is Pediatric chairman of Good Samaritan Hospital in West Islip, New York. He has been working for many years with a large number of children and adults with PWS. Dr. Angulo was among the first to report growth hormone (GH) deficiency and response to replacement therapy in PWS, which helped obtain FDA approval for GH treatment in for PWS without stimulation testing. He has been an active speaker about PWS in national and international medical conferences. He is a member of PWSA (USA), PWS Alliance of New York, IPWSO Clinical and Scientific Advisory Board, and Friends of IPWSO.
Marilyn Dumont-Driscoll, M.D. PhD, Director, is a faculty member in the Department of Pediatrics in the Division of General Academic Pediatrics at the University of Florida College of Medicine, Gainesville. She has a background in genetics having received her PhD in Medical Genetics from Indiana University School of Medicine and pediatric training at Johns Hopkins Hospital. She provides pediatric primary care to children with Prader-Willi syndrome and has served as a member of the Board of IPWSO, the IPWSO Clinical and Scientific Advisory Board, and the PWSA(USA) Clinical Advisory Board.
Michelle Torbert, Director, has served on the PWSA(USA) board of directors for almost 10 years and is currently the Board Chair, her second time. She is also Chair of the PWSA(USA) National Conventions and serves as a board member and its former President for Prader-Willi Florida Association. Michelle and her husband Tommy are in the Produce business and have 4 sons who all work with their father. Their daughter Leslie, who has PWS, is 22 years old and lives at home.
Timothy Russell, M.D., Director, is a recently retired Family Physician who worked for the US Army in Japan. When his son, Liam, who has PWS, was born in 1999, IPWSO quickly responded to the query about PWS medical specialist in Japan who might speak English. IPWSO has been a continued source of support for us, including the wonderful triennial IPWSO meetings. Originally from Wisconsin, Tim now lives in Kirkland, WA, with his wife, Junko, and Liam. There are two older sons also living in the US.
IPWSO (the International Prader-Willi Syndrome Organisation) brings information and support to families today where there is still none. IPWSO also advances research, management, education, and care giving techniques specific to the needs of those who have Prader-Willi syndrome. This knowledge changes lives. Friends of IPWSO is committed to supporting this transformation.” Joan Gardner, Friends of IPWSO President