The Scientific Advisory Board of the Conquer Fragile X Foundation counts among its ranks some of the most well respected leaders in the fragile X research world. Not only have they dedicated their professional careers to the study of fragile X and other such disorders, but they continue to be so generous, providing their experience and guidance to our cause. Each issue of the CFXF newsletter highlights one of these remarkable scientists and now we proudly introduce you to our newest member, Dr. Assam El-Osta.

Recently, Dr. Assam El-Osta, of the Peter MacCallum Cancer Institute joined the Conquer Fragile X Foundation's Board of Scientific Advisors and became a CFXF project grantee. Along with our other Scientific Advisors, Dr. El-Osta will provide the Foundation with scientific guidance and share his experience. Dr. El-Osta's project, "Profiling Chromatin-Dissecting the regulatory binding pattern of Fragile X chromosome in vivo." was recently funded by CFXF.
At present, Dr. El-Osta is a Senior Research Fellow at the Peter MacCallum Cancer Institute at Melbourne, a facility he joined in 1997. After receiving his Ph.D. from the University of Melbourne, he was immediately awarded the highly prestigious and nationally competitive Anti-Cancer Council of Victoria, Postdoctoral Research Fellowship and worked as a Research Fellow at the Peter MacCallum Cancer Institute where he continues his work in transcriptional gene silencing.

In 1999 Dr. El-Osta was invited by the world renowned chromatin biologist, Dr. Alan P. Wolffe to join him and his team at the Laboratory of Molecular Embryology, National Institutes of Health, U.S.A. to examine in greater detail the repression mechanisms of human MDR1 gene in cancer. A mentor and a good friend, Alan Wolffe nurtured El-Osta's research objectives and together they identified the transcriptional repressor complexes associated with the therapeutically relevant multidrug resistance (MDR1) gene. Understanding the mechanism of transcriptional regulation is crucial if we are to offer therapeutic intervention. This work was published recently in prominent molecular and cellular biology publications.

We are delighted to have Dr. El-Osta serve as a scientific advisor and to join our distinguished fragile X researchers. Welcome, Dr. El-Osta.

TASC APPROACH TO PEDIATRIC NEUROREHABILITATION- TIMING IS EVERYTHING

Karen Pape, MD, a Toronto Neonatologist and lifelong tennis player and coach, has developed the TASC Approach to treating children with a wide range of neurological afflictions (TASC stands for Technology, Attitude, Systems, Coaching). Dr. Pape has developed a series of workshops that teach parents and professionals the importance of structuring, timing and sequencing therapeutic interventions of all types to maximize the abilities of the brain at all of it's various developmental stages. Dr. Pape's TASC approach teaches that any plan of service developed for children, including learning plans, such as speech or occupational therapy plans, must take into account the stages of brain development. The TASC approach adapts technologies and applications for peak performance athletes and applies them to the rehabilitation of brain injured children. Dr. Pape believes that Olympic athletes and children with neurological problems have a lot in common; each needs to train to achieve their personal best.

Dr. Pape has a training session schedule for July 27-28 in San Antonia, TX. Our next newsletter will feature an interview with Dr. Pape and her

ideas about the application of the TASC Approach to fragile X and other neuropsychological disorders such as autism and Pervasive Developmental Disorder. For more information, see the TASC website at www.tascnetwork.net.

CFXF SUPPORTS FULL IMPLEMENTATION OF THE PEDIATRIC RULE

Recently, the Conquer Fragile X Foundation joined the American Academy of Pediatrics, the Society for Pediatric Research, members of the Coalition for Children's Health, and others interested in Children's Health issues in urging legislators to co-sponsor (S. 2394/H.R. 4730) implementing the Pediatric Rule. The Rule requires drug companies to conduct pediatric studies of new products and some products already on the market. In March 2002, the FDA abruptly announced plans to suspend the Rule. Outcry from CCH and others caused Secretary of Health and Human Services Tommy Thompson to announce in April that the FDA would continue to implement the Rule. This action by the FDA illustrates the vulnerability of the rule and demonstrates the urgency with which it must be elevated from regulation to law. Currently, many medications are used on children but have only been tested for adult use. This legislation will make more medications safely available for children and perhaps open the door to new drug therapies for pediatric disorders.