M.I.N.D. INSTITUTE HOSTS SYMPOSIUM ON EFFECTIVE

(SACRAMENTO, Calif.) - Improving the quality of life for boys and men with XXYY syndrome is the focus of a symposium beginning July 15 at the University of California, Davis, M.I.N.D. Institute in Sacramento. The four-day event is the first to unite families from throughout the country with medical professionals to address the specific research and treatment needs of patients with the syndrome, a chromosome anomaly affecting 1 in 50,000 males.

Males with XXYY have an extra X and Y chromosome, which leads to a variety of health, mental health, educational and social concerns that include developmental delays, learning disorders, sensory integration dysfunction, poor muscle tone, dental problems and seizures. Given the array of possible symptoms, patients usually receive a variety of diagnoses - from autism to bipolar disorder to epilepsy.

"Very few medical professionals truly understand XXYY and not enough research is focused on helping this patient population," said Nicole Tartaglia, a fellow in developmental-behavioral pediatrics at the M.I.N.D. Institute and one of the symposium planners. "Most of the prior research was conducted in the 1970s with patients who were extremely affected, leading to a limited perspective on XXYY patients and a lack of knowledge about the specific therapies that can help them. Specialists at the M.I.N.D. Institute who are conducting comprehensive new research studies are working to update that information and host collaborative events with families to find answers to this genetic disorder."

Sponsored in part by The XXYY Project, a nonprofit parent support organization based in Aurora, Colo., the symposium begins with social events, tours of research facilities and overviews of current research. M.I.N.D. Institute specialists will present two ongoing studies on XXYY syndrome, one on behaviors and emotions and the other on social development. On the final day, July 18, a series of presentations by institute researchers and clinicians cover various interventions - medication, occupational therapy, social skills training and assistive technology - and how they can improve daily life for XXYY patients.

The July 18 presentations are open to XXYY families and interested members of the public who obtain visitor passes in advance. For a complete agenda, click here. For more information or to request a visitor pass, contact Nicole Tartaglia at (916) 703-0286. To learn more about XXYY syndrome and view a public service announcement in which Tartaglia identifies features of the disorder, go to www.xxyysyndrome.org.”

M.I.N.D. INSTITUTE HOSTS SYMPOSIUM ON EFFECTIVE XXYY SYNDROME TREATMENTS