06/24/14 Conference Call

I had the DISTINCT PRIVILEGE of sitting in on a conference call of the experts studying the PhotoDynamic Therapy (PDT) of dermal NF1 tumors. Indeed this WAS a DISTINCT PRIVILEDGE; Click here to read more...

I witnessed the quality of the expertise, their thoroughness, and the combined decades of heavy duty multidisciplinary experience being applied – all with a very nice synergistic result. In addition, they are all really nice, and VERY dedicated people! If there is progress to be made on NF1 dermal PDT, this team can do it – Gave me goose bumps to think of the talent being applied!

The participants were – • Harry Whelan, MD pediatric neurologist, MCW, PDT & Hyperbaric Therapy, Overall         Principal Investigator of NF PDT Research • Brendan Quirk, PhD biochemist, MCW, Overall Scientific Coordinator of PDT research • Edit Olasz, MD, PhD dermatologist, MCW, PDT specialist, Co-Principal Investigator of Dermal PDT • Dawn Siegel, MD, dermatologist, MCW, NF specialist, Co-Principal Investigator of Dermal PDT • David Muir, PhD, neurobiologist, U of FL, largest human NF cell bank in World, NF mouse models, PDT on mice with human NF cells • Margaret Wallace, PhD, neurogeneticist, U of FL, human genome, identified NF1 chromosome defect, Children’s Tumor Foundation Board of Directors • John Vigilante, MD, US Navy, Lovell Federal Health Care Center

Dr. Siegel could not participate because of a last minute conflict. The objective of the call was twofold – 1) To discuss possible publication of the history and/or ongoing research using PDT to treat NF1 dermal tumors, 2) A natural offshoot was an unstructured discussion of the details of the current clinical studies.

PUBLICATION – Appears that a review of past and present work associated with PDT of NF1 dermal tumors will be prepared. The MCW/CHW study is the first known to treat human dermal tumors with PDT. Each expert can provide in-depth information based on their individual experience and meld it into the present clinical study. The resulting publication will probably be a composite, each expert writing a section and Dr. Vigilante providing the introduction and summary.

CLINICAL STUDIES – A lot of thought is being given to defining critical parameters, refining the procedure, taking into account patient specifics, etc. They are making very basic decisions that will enable a more routine protocol to evolve. At this point many questions are being discussed re: what type of tumor to treat. Tumor characteristics such as size, shape, dermal vs subdermal, mature vs incipient are under consideration. Also important are proper lab diagnostics, analysis, and documentation of the effect of PDT on tumor ……. All aspects are being optimized with the objective to define a clinical routine protocol that successfully treats dermal NF1 tumors. One background thought that looms – can incipient tumors be treated, thus avoiding the physical and emotional pain and anguish that comes to children and family as the tumors grow larger??

The equipment that makes the study possible has been a significant problem. Inadequate NIR (Near InfraRed) light sources have caused numerous problems and delays. Fortunately that is behind us, the Children’s Tumor Foundation (CTF) granted funds to enable 2014-6-24 HW under light DSC_0853-1purchase of a 630 nm red light made by Omnilux. This medical quality light provides the correct wavelength, has even higher intensity than needed, is a multi-panel array able to treat a large area approximately 15 x 15 inches, and can operate continuously for the desired treatment time. The photo shows Dr. Whelan under the Omnilux light, note the benign nature of the light.  Bright spots on chest is his tie which is more reflective.

CURRENT STATUS – At this point, much of the study’s foundation is now built. We are getting close to being able to focus on harvesting treatment data and learning what is important for successful PDT treatment of dermal NF1 tumors.

As an aside, Dr. Olasz reports that the local NF community is REALLY EXCITED! NF families are thrilled that a NON-surgical procedure is being developed! The patients want to do what they can to provide improved treatment for their children. Dr. Olasz has no problem finding volunteers for the study.


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