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September 2012 Newsletter

Lyla Nsouli

Foundation Events

The Foundation is delighted to be holding its inaugural event, "Wishes and Witches", a carnival of Halloween fun for the family,  October 14th, 2012 from 3-6pm, at One Mayfair, 13a North Audley Street. There are a limited number of tickets available on  http://www.etickets.to/buy/?e=8818. We look forward to seeing you there!

As you are aware, a number of our friends are undertaking various challenges to raise funds for the Foundation. You can read about these fundraising efforts at www.lylansoulifoundation.org/events

Current efforts underway are:

1) Rani Ali Ahmad is planning to climb the highest peak in North America in one day www.justgiving.com/mountwhitney

2) Marwa Elborai  is running  The Royal Parks Foundation Half Marathon www.justgiving.com/Marwa-Elborai

3) A team from KX Gym is undertaking to climb Kilimanjaro www.justgiving.com/carlos-lina

We also wanted to take this opportunity to send our special thanks to Nizar Fakhoury and his Climb for Cancer Team (www.justgiving.com/cfcc) who successfully climbed Mt. Elbrus in Russia, the highest peak in Europe, and raised over £14,000 for The Foundation. Thank you for this amazing achievement!

Climb for Cancer Team

New Grants Approved

The Foundation has approved two new grants, including its largest grant to date.


Assessing Regional Tumor Response After Convection Enhanced Delivery (CED) for Diffuse Intrinsic Pontine Glioma (US$114,670 Grant)

The Lyla Nsouli Foundation is proud to announce the award of a US$114,670 grant to Dr. Mark Souweidane at the Joan & Sanford Weill Medical College of Cornell University.

In clinical trials for children with DIPG, length of survival has served as the only measure of therapeutic benefit. This outcome measure is reasonable assuming the entire tumor is equally affected by drug delivery. However, distribution of a therapeutic compound delivered by CED is expected to have some variability within a defined volume. The study’s hypothesis is that DIPG tumor response will occur on a regional and variable basis after being treated with CED. To test this hypothesis a reliable method must be devised that offers an objective measurement of response within different zones of each individual tumor. Measuring DIPG response has thus far been problematic since these tumors do not typically exhibit contrast enhancement and tumor volume is difficult to define, two parameters commonly used for other brain tumor response assessments.  Without a means for assessing early therapeutic response, potential beneficial strategies that employ local delivery may be masked and inaccurately be abandoned. To date, no method has been developed to measure regional tumor responses as a function of local therapeutic delivery. Assessing intratumoral response will play a critical role in defining future CED parameters, including anatomic targets, infusion rates, durations, and volumes.  The intent of this proposal is to design a reliable method by which tumor response can be measured on a regional intratumoral basis and to merge this response information with an assessment of drug distribution. 

Rapid Preclinical Development of a Targeted Therapy Combination for DIPG (Supplemental $8,800)

An additional $8,800 was granted to Oregon Health & Science University to include John Hopkins University in this DIPG Preclinical study. You can monitor the progress of this study on http://pptiohsu.blogspot.co.uk/

New Members Join the Foundation’s Scientific Advisory Committee

We are very grateful for the work of our existing Scientific Advisory Committee Members and would like to thank two new members who have agreed to also join the Committee and bring their own perspectives and areas of expertise in the evaluation of proposals for funding by the Foundation.


Dr. Clinton Stewart, St Jude Children’s Hospital
Dr. Clinton Stewart is a Full Member in the Department of Pharmaceutical Sciences at St. Jude Children’s Research Hospital and Professor of Pediatrics and Clinical Pharmacy at the University of Tennessee, Memphis. He received his B.S. degree in Pharmacy from Auburn University and his Doctor of Pharmacy from the University of Tennessee, Memphis. After completing a postdoctoral fellowship at St. Jude under the mentorship of Dr. William E. Evans, Dr. Stewart joined the University of Tennessee College of Pharmacy faculty; in 1991, he joined the St. Jude faculty. Dr. Stewart is an active member of several professional organizations, including the American Association of Pharmaceutical Scientists, the American Society of Clinical Oncology, and the American Association of Cancer Research. His research efforts are focused in the area of pediatric clinical pharmacology, addressing clinically relevant problems of cancer therapeutics in children. Current research efforts include the use of preclinical models to enhance design of clinical trials of new agents in children with cancer and the use of pharmacokinetics as a method to optimize drug exposure in children with cancer. Dr. Stewart has authored or co-authored more than 200 peer-reviewed articles and book chapters. Co-chair of the Pharmacology Committee of the NIH-funded Pediatric Brain Tumor Consortium, Dr. Stewart has an active research program focused on developing a better understanding of the CNS penetration of anticancer drugs.

Dr. William Weiss, University of California, San Francisco
Dr. Weiss received his MD and PhD degrees from Stanford (1982-1989).  He completed his pediatric residency at Children’s Hospital, Boston, in 1991, and his Neurology & Child Neurology residency at the University of California, San Francisco (UCSF) in 1992. Dr. Weiss is currently Professor of Neurology, Pediatrics and Neurosurgery at UCSF and Interim Director of the Child Neurology Division.
The Weiss laboratory at the University of California, San Francisco is broadly interested in developing and characterizing mouse models that faithfully recapitulate the biology and genetics of human tumors of the nervous system, and using observations in the mouse to inform the biology, genetics, and therapy of human tumors. Specifically, the Weiss lab works to:

1) Identify the subsequent genetic events that promote tumorigenesis.

2) Study cancer stem and progenitor cells to understand their contribution to malignant progression.

3) Evaluate new targets, therapies, and mechanistic rationales for combining targeted agents.

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We sincerely thank you again for your interest and support.  With the continued support of donors like you, The Lyla Nsouli Foundation will be able to help improve and save the lives of children affected by brain cancer.
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