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PrintThe Burrill Report (July 10, 2009): Searching for a Cure (.MP3,8.29 Mb)
In this first in a series of podcasts focused on rare disease patient advocates jointly produced by The Burrill Report, the California Healthcare Institute, and the Children’s Rare Disease Network, we speak to Debra Miller, president and founder of Cure Duchenne. When Miller’s five-year-old son was diagnosed with Duchenne Muscular Dystrophy, she faced grim news. The progressive muscle loss caused by the disease typically leaves these children wheelchair-bound by age 10 and robs them of their lives by 20. As she and her husband explored treatment options and ways they could become to raise money for research, they found that existing organizations were often focused on palliative care and focused on academic research rather than working with industry. Miller and her husband launched Cure Duchenne to help fund promising research at biotech companies in the hopes of seeing these therapies developed and commercialized. We spoke to Miller about her son’s story, new approaches to treating Duchenne, and the problems of funding cutting-edge research.
Part II
The Burrill Report (July 17, 2009): A New Model for Funding Reserach (.MP3,9.25 Mb)
Part II
The Burrill Report (July 17, 2009): A New Model for Funding Reserach (.MP3,9.25 Mb)
In this second in a series of podcasts focused on rare disease patient advocates jointly produced by The Burrill Report, the California Healthcare Institute, and the Children’s Rare Disease Network, we speak to Beth Anne Baber, CEO of The Nicholas Conor Institute for Pediatric Cancer Research. When Baber’s son Nicholas was diagnosed with stage 3 neuroblastoma she and her husband, both cancer researchers, fully understood the seriousness of the diagnosis. Because of the location of the tumor, radiation and surgery were not options. But as they explored treatments they discovered a startling fact. Most cancer therapies used to treat children were about 25 years old and drug companies weren’t generally pursuing new therapies for children with various cancers because the markets simply weren’t large enough. Her institute offers a new model. It seeks out industry partners to help develop specific technologies it wants to bring into the clinic while helping to fund that work.
Part III
The Burrill Report: (July 24, 2009): New Approaches to Treatment Needed in Pediatric Cancer (.MP3,9.78 Mb)
Part III
The Burrill Report: (July 24, 2009): New Approaches to Treatment Needed in Pediatric Cancer (.MP3,9.78 Mb)
In this third in a series of podcasts focused on rare disease patient advocates jointly produced by The Burrill Report, the California Healthcare Institute, and the Children’s Rare Disease Network, we speak to Susan Cornelius, business advisor to The Nicholas Conor Institute for Pediatric Cancer Research. When her granddaughter struggled against cancer, she was frustrated that new technology was unavailable to her and that all doctors could offer were surgery, radiation or chemotherapy – what she characterized as cut, burn, or poison the child for a disease, in her granddaughters case, that was genetically-based. Cornelius lost her granddaughter to cancer in 2008, but now works to bring about changes to the way research is conducted.
