{"id":1322,"date":"2023-08-10T15:23:55","date_gmt":"2023-08-10T15:23:55","guid":{"rendered":"https:\/\/pediatricbrainfoundation.org\/archive\/best-next-steps-advance-field-pediatric-neurology\/"},"modified":"2023-08-10T15:23:55","modified_gmt":"2023-08-10T15:23:55","slug":"best-next-steps-advance-field-pediatric-neurology","status":"publish","type":"page","link":"https:\/\/pediatricbrainfoundation.org\/archive\/best-next-steps-advance-field-pediatric-neurology\/","title":{"rendered":"The Best Next Steps to Advance the Field of Pediatric Neurology"},"content":{"rendered":"
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\u00ab Back to Workshops<\/a><\/div>\n<\/section><\/div>\n
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The Best Next Steps to Advance the Field of Pediatric Neurology<\/h1>\n<\/section><\/div>\n
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Date:\u00a0<\/b> January 11-13, 2013<\/p>\n

Subject:\u00a0<\/b> The Best Next Steps To Advance The Field Of Pediatric Neurology<\/i><\/p>\n

Location:<\/b> \u00a0La Jolla, CA<\/p>\n

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Attendees: \u00a0<\/b>Top scientists and researchers including: Jeffrey Macklis, William Mobley, Mark Noble, Evan Snyder, Gary Clark, Stephen Huhn, Jeanne Loring, Margot Mayer-Proschel, Robert \u201cWillie\u201d Mays, Sidhartha Tan, and Alysson Muotri. \u00a0As well as parent advocates, Bernard Siegel of Genetic Policy Institute, Pediatric Brain Foundation staff and interns,\u00a0and CNS Foundation\u2019s Founder, Fia Richmond.<\/p>\n

Recap:<\/b> \u00a0In January, scientists from both academia and the private sector sat down with the Pediatric Brain Foundation team and advocacy leaders at our 2013 Scientific Workshop: The Best Next Steps to Advance the Field of Pediatric Neurology<\/i>.\u00a0 Through an ambitious agenda, we identified barriers to progress and discussed innovative and practical ways to navigate these hurdles.\u00a0 With support from the California Institute of Regenerative Medicine (CIRM), representatives from Harvard Medical School, Sanford Burnham Medical Research Institute, University of California, Texas Children’s Hospital and other institutions offered expert analyses and opinions.

The workshop took place at a crucial time, as the NIH\u2014the largest funder of science on the planet\u2014continues to operate with an atrophied budget.\u00a0 The agency is receiving unprecedented numbers of funding requests and the overwhelming majority are being denied; labs and research facilities across the United States are closing and we are in danger of experiencing a \u201cbrain drain,\u201d as scientists are lured onto alternative paths, sometimes leaving the field entirely, to pursue their work.\u00a0

In the 1990s, President Clinton increased the NIH budget and both the academic and private sector teemed with scientific progress.\u00a0 Workshop participants agreed that an increase in the NIH budget would provide an immense boost to field of pediatric neurology and science as a whole.\u00a0 While this may seem obvious, it is important to reinforce and remain steadfast in pressuring policy makers to protect scientific research.

One idea, which has come up time and again in past workshops, is the need for a Natural History Database of Pediatric Neurological Diseases.\u00a0 A database that includes the complete medical histories of children with common, rare and undiagnosed neurological conditions would allow researchers to search for commonalities among patients and amongst very complex disorders.\u00a0 This would be especially useful when studying rare or undiagnosed diseases, as children afflicted are often too sick and fragile to travel across the country to different laboratories and clinics.\u00a0 While many similar databases exist for specific diseases, there is no single collection of pediatric neurological conditions.

Pediatric Brain Foundation has a long history of bringing together scientists, advocates, parents, policy makers and representatives from the private sector. \u00a0Pediatric Brain Foundation is uniquely suited to champion a project like a Natural History Database.\u00a0 While we are still flushing out the details and researching the best strategies to bring this idea to fruition, we are confident Pediatric Brain Foundationcan act like a force multiplier and rally the field to complete this project.\u00a0

Despite the dearth of scientific funding, our country is full of great minds working on great challenges, and progress is occurring everyday.\u00a0 The question for Pediatric Brain Foundation is:\u00a0What can we do today to lay the groundwork for breakthroughs tomorrow?\u00a0<\/em>
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