The Rett Syndrome Research Trust (RSRT), the premier organization exclusively devoted to global research on Rett Syndrome and related MECP2 disorders, is pleased to announce the appointment of Anthony P. Schoener to its Board of Trustees.
Mr. Schoener has worked in the telecommunications field for over 25 years. In 2000 he co-founded Starent Network Corporation, a leading supplier of IP-based mobile infrastructure solutions for mobile and converged network operators. The company, which is based outside of Boston, went public in 2007 and was subsequently sold to Cisco Systems in late 2009.
Mr. Schoener’s interest in RSRT is personal. His 17- year- old daughter Kelly is afflicted with Rett Syndrome, a neurological disorder that strikes little girls almost exclusively, with first symptoms usually appearing before the age of 18 months. These children lose speech, motor control and functional hand use, and many suffer from seizures, severe anxiety, orthopedic and severe digestive problems, breathing and other autonomic impairments. Although some victims of Rett Syndrome do not survive childhood, most live to become adults who require total, round-the-clock care.
“Our daughter is a teenager, so my wife, Kathy, and I are not newcomers to Rett Syndrome. We have been following the science and contributing to the efforts of the various advocacy groups for over a decade. Our decision to engage at the RSRT board level at this time is a reflection of the urgency and the optimism we feel about the potential for treatments and a cure. We feel strongly that supporting RSRT is a direct and effective way to accelerate high-impact research.,” Mr. Schoener said.
Executive Director Monica Coenraads, whose daughter is severely disabled by Rett Syndrome, welcomes Mr. Schoener’s participation in RSRT. “We are honored that Mr. Schoener has joined our Board. In the last year the potential approaches to treating and curing Rett Syndrome have expanded considerably. Our ability to provide adequate financing for these promising new research directions must therefore also expand. Mr. Schoener’s entrepreneurial spirit and skills will play a key role in our efforts.”
About Rett Syndrome
Rett Syndrome is a genetic neurological disorder that almost exclusively affects girls. It strikes randomly, typically at the age of 12 to 18 months, and is caused by random mutations of the MECP2 gene on the X chromosome. Rett Syndrome is devastating as it deprives young girls of speech, hand use, normal movement often including the ability to walk. As the girls enter childhood the disorder brings anxiety, seizures, tremors, breathing difficulties, severe GI issues. While their bodies suffer, it is believed that their cognitive abilities remain largely intact. Although most children survive to adulthood, they require total round-the-clock care.
About the Rett Syndrome Research Trust
RSRT is a non-profit organization with a highly focused and urgent mission: eradicate Rett Syndrome and related MECP2 disorders. In search of a cure and effective treatment options, RSRT operates at the center of global scientific activity, funding bold projects that are unlikely to be supported by the NIH or other more traditional funding agencies. RSRT refutes the conventional practice of labs working in isolation, instead seeking out, promoting and funding collaborations and consortia in which scientists work across multiple disciplines. These relationships enable the development and execution of a research agenda that neither academia nor industry could achieve alone. Since 2008, RSRT has provided $25 million of financial support to: 4 clinical trials testing 3 compounds, 33 scientists in 27 academic institutions and 3 biotech firms. To learn more about the Trust, please visit www.ReverseRett.org.