“The passing of a man of the vision of Jean Deleage is a great loss to the world,” commented Keegan Johnson, Executive Director of the FPWR, “The best way for us to honor his life is to accelerate our work to create better treatments for people with PWS“
San Francisco and Los Angeles (PRWEB) November 02, 2011
The estate of Jean Joachim Deleage, together with the Foundation for Prader-Willi Research (FPWR), today jointly announced a donation of $500,000 made by the estate to further primary research into Prader-Willi Syndrome, a childhood disease that has painful and devastating effects from birth, through childhood and lasting throughout the lives of its victims. Prader-Willi Syndrome (PWS) is a rare genetic disorder, occurring in approximately 1 in 15,000 births, that causes insatiable hunger, low muscle tone and cognitive delays. PWS is the most common genetic cause of life-threatening childhood obesity. The FPWR identifies, prioritizes and funds patient-relevant science to reach the goal of improved treatments and ultimately a cure for PWS.
Jean Deleage was a prominent and accomplished venture capital pioneer who backed and helped launch hugely innovative companies such as Tandem, Genentech and Chiron. Honored with a lifetime achievement award by the National Venture Capital Association, Deleage kept on working closing deals and attending board meetings right up to his death, and had expressed his intention to focus energy on helping with Prader-Willi research as his next project just before his last deal closed, days before his passing. In his last intentions, Deleage asked that a portion of his estate be donated to the Foundation for Prader-Willi Research (http://www.fpwr.org ).
The Foundation for Prader-Willi Research (FPWR) is dedicated to advancing research with the goals of eliminating the challenges of Prader-Willi Syndrome through the advancement of research, and hopefully someday finding a cure. For many of the children afflicted with Prader-Willi syndrome, simply finding therapies to treat and manage their insatiable appetite and control their tendency to obesity would represent huge improvements in their quality of life and ability to function without constant supervision.
“The passing of a man of the vision of Jean Deleage is a great loss to the world,” commented Keegan Johnson, Executive Director of the FPWR, “and, I have no doubt that he would have made a significant personal contribution to Prader-Willi research had he been able to carry on. The best way for us to truly honor his life is to accelerate our work to create better treatments for people with PWS. “
Among the reasons for Deleage’s personal interest in the work of the FPWR was that his grandson who suffers from Prader-Willi syndrome, and he saw the heart-breaking affects of the disease first-hand. He wished to find ways to make the lives of children afflicted with the syndrome more tolerable.
“My father had made plans to get directly involved with research for Prader-Willi Syndrome, but died before he could,” said Andre Deleage, son of Jean Deleage. “He is missed, but his legacy will live on. “
About the Foundation for Prader-Willi Research
The Foundation for Prader-Willi Research was established in 2003 by a small group of parents who saw the need to foster research that would help their children with Prader-Willi syndrome lead more healthy and fulfilling lives. Today, FPWR is composed of hundreds of parents, family members, researchers, and others who are interested in addressing the many issues related to PWS, including childhood obesity, developmental delay, psychiatric disorders and autism spectrum disorders.
The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. For more information visit: http://www.fpwr.org. High quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burden of PWS, allowing them to lead full and independent lives.