Angelman Syndrome Foundation selects renowned researcher to lead its Scientific Advisory Committee’s pursuit of research endeavors that improve quality of life for individuals with Angelman syndrome
The Angelman Syndrome Foundation (ASF) announced today that drug discovery expert and Dart NeuroScience Chief Operating Officer Daniel Harvey, Ph.D., has been selected to serve on the ASF board of directors and chair the ASF Scientific Advisory Committee (SAC). The SAC determines the ASF’s research focus and projects that it will fund to drive breakthroughs in advancing the understanding and treatment of Angelman syndrome, a neurogenetic disorder similar to autism that occurs in one in 15,000 live births.
In his role as the SAC chairperson, Harvey will lead a 15-person committee comprised of academic and industry researchers and clinicians and experts in psychology, communications and education that evaluate research proposals submitted to the ASF for funding. In addition to reviewing research that seeks to improve treatments and find a cure for Angelman syndrome, the SAC plays a major role in the ASF’s annual scientific symposium, facilitating connections with researchers and promoting research initiatives. On the ASF’s board of directors, Harvey joins 11 other members, many of whom are parents of individuals with Angelman syndrome.
“With more than 20 years of experience in drug discovery research and organic chemistry, Dan Harvey will lead the SAC in continuing to implement a roadmap that effectively guides the ASF’s funding of proposed research initiatives toward therapies and a cure for Angelman syndrome,” said Tim McCarty, president of the ASF board of directors. “We are again thrilled with Dan Harvey’s contribution of time and expertise to the ASF, which will have positive implications for the entire Angelman syndrome community.”
Harvey has been involved with the ASF since his son was diagnosed with Angelman syndrome in 1996. From 1997 to 2001, he was a member of the ASF board of directors, served as vice president from 1997 to 1999, and chaired the SAC from 1999 to 2003.
“As a parent of an individual with Angelman syndrome, I have seen and experienced how ASF-funded research has changed lives and provided immense hope for individuals with Angelman syndrome and their families,” said Daniel Harvey, Ph.D. “I am honored to contribute to this incredible group of individuals on the SAC whose efforts in recent years, under the leadership of Dr. Charles Williams, have helped the ASF achieve remarkable milestones in advancing the understanding and treatment of Angelman syndrome. We are in an entirely new era for funding and research.”
Dr. Charles Williams, who is currently an ASF director, the immediate past SAC chair and a professor of pediatrics and medical genetics at the University of Florida, is a founding member of the ASF. Since ASF’s formation in 1992, he has served in several leadership roles. Williams chaired the SAC from its inception in 1994 until 1999 and again from 2008 to 2012, a time when many ASF-funded projects led to breakthroughs in Angelman syndrome research.
“Several ASF-funded research projects have led to pioneering discoveries about Angelman syndrome that have positively impacted the entire Angelman community including the ability to un-silence the UBE3A gene in mice with Angelman syndrome, uncovering the possible root cause of seizures in individuals with Angelman syndrome, and a low-glycemic index therapy to reduce seizures, a potentially life-threatening symptom that occurs in 90 percent of individuals with Angelman syndrome,” said Williams. “This is a remarkable time in Angelman syndrome research and I look forward to continuing my involvement in the ASF by serving both as a board member and as a member of the SAC.”
Since its formation in 1992, the ASF has funded a diverse set of 66 research projects at more than 37 research institutions. The ASF has awarded $4.6 million in research grants, $4.3 million of which have been granted since 2005.
ABOUT THE ANGELMAN SYNDROME FOUNDATION
The Angelman Syndrome Foundation’s mission is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. The ASF sponsors Angelman syndrome research through grants to researchers pursuing promising avenues of discovery. Since 1996, the ASF has funded 66 research grants totaling more than $4.6 million. The ASF has awarded a majority of these funds ($4.3 million) beginning in 2005.