A Kids’ Brain Tumor Cure Foundation launched its Webinar Series Program on Monday, May 5th, as 200 attendees from 33 states and 4 countries listened and watched as Dr. Mark Kieran presented findings from the recently published study entitled “Long-Term Survival Outcomes for Low Grade Glioma Patients”. Little has been studied before about the outcomes for these patients, but thanks to a generous grant from A Kids’ Brain Tumor Cure, and a number of other like-minded organizations, Dr. Kieran and his colleagues were able to conduct the largest and most comprehensive study focusing on 4040 patients diagnosed with PLGG between 1973 and 2008 through the Surveillance Epidemiology and End Results (SEER) database to examine outcomes of adult survivors of PLGG. According to Dr. Kieran, “children with pediatric low-grade gliomas (PLGG) are known to have excellent 10-year survival rates; however until now, the outcomes of adult survivors of PLGG have been relatively unknown. Now we can see clear patterns based on treatment options chosen to mitigate the tumors throughout childhood…”

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Feedback on the webinar has been overwhelmingly positive as LGG families report that the content was informative and supportive in terms of helping provide perspective on treatment implications for LGG patients and guidance for families who are evaluating potential treatment options. Dr. Kieran’s message was clear, ‘parents need to get more involved in making the treatment decisions and requesting second opinions to ensure the best possible outcome for their child, taking into consideration long and short term costs of available treatment options.’

Dr. Kieran also touched on the historical lack of research in the area of PLGA, and noted that due to the relative lack of a substantial patient base (less than 30,000 children are battling LGG) and low morbidity rate, there was relatively little hope for the National Institutes of Health (or National Cancer Institute) to take action to help find more effective treatments and a cure. UNLESS, the families with children battling this disease were able to work together, like the efforts of A Kids’ Brain Tumor Cure Foundation, to help raise awareness and targeted funding for the disease.

Questions and Answers:  Dr. Mark Kieran, with the help of his associates,  Dr. Peter Manley, Dr. Susan Chi, Dr. Nadine Sauer, Dr. Pratiti Bandopadhayay and Dr. Adam Green, have provided answers to the outstanding questions that were submitted by webinar attendees.  In some cases, the questions have been tweaked slightly in order to condense the topics, however, often they are verbatim.  While there will be subject matter that will not pertain to each participant, we thought it would be most beneficial to provide all questions and answers to the entire group.

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A September webinar is in the works (date TBD) and promises to address progress in the treatment field including the newest, most promising targeted therapies.