You may wonder where the money you donate to Because of Ezra goes. A large portion of our outgoing financial support is to the NMTRC, or Neuroblastoma Medulloblastoma Translational Research Consortium.
Chaired by Dr Giselle Sholler, the NMTRC is a group of 18 universities and children’s hospitals headquartered at Van Andel Research Institute that offer a nationwide network of childhood cancer clinical trials. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma.
Each year, the NMTRC members and supporters meet up at the NMTRC Symposium to have a “state of the union” so to speak of the past year’s work. This year’s symposium was in Austin, TX this past Wednesday and Thursday (May 16-17), and Because of Ezra founders Kyle and Robyn Matthews attended the event for our second year.
One of the most refreshing parts of this group is the community aspect – over 100 physicians, researchers, scientists, and family members show up each year to meet all in one place. It’s very collaborative – we share meals together, stories, laughs, tears, and of course talks of progress made in the past year. The NMTRC is a passionate group of extremely bright individuals making a difference – and we’re very proud to be a part and toss our dollars in the hat.
This year focused heavily on personalized medicine trials, or targeted treatments. To explain, a little history – chemotherapy, which was only discovered in 1942, is the main treatment for cancer. Chemotherapy is poison – in fact, the first chemo was mustard gas, which was injected into patients after folks during World War 1 noticed it suppressed blood production. Because cancer grows faster than normal cells, the chemo kills cancer faster than it kills the body (is the hope), and then the body recovers (is the hope). You know all those pictures you see of bald, skinny, hollow eyed cancer patients? That’s not cancer doing that – it’s chemo. Of course, it’s the best we’ve had until now.
Since mapping the human genome, we can now attempt to target therapy. The NMTRC’s work is focusing on (among other things – and this is a high level overview) taking a biopsy of a tumor, identifying it’s mutations, and treating with a chemotherapy which will target ONLY these mutations – making the treatment go from systemic (poisoning the entire body) to targeted (poisoning only the tumors). It’s showing a lot of promise.
There’s a LOT of information, and up until recently it could take 17 days from biopsy to a list of targeted drugs (these are FDA approved drugs). Dell has stepped up this year to a long-term commitment to the NMTRC’s work with millions of dollars of hardware and systems analyzing. This has already cut over 2/3 of the processing time down – from 17 days to roughly 5 days.
Another important and exciting new trial is centered around DFMO, a drug taken orally. This drug can be taken by kids who have reached no evidence of neuroblastoma disease – to prevent relapse. Relapse is highly likely, and there are very few current options. Will Lacey, son of Friends of Will founder Pat Lacey, has been taking DFMO since May of 2012 with zero side effects, and normal blood counts.
This is incredible work. What’s even more amazing is the targeted medicine trias are being pioneered in pediatric cancer instead of adults. Since the 1980s, the FDA has approved only one new pediatric cancer treatment, compared with 50 treatments approved for adult cancer in this same timeframe. There is still a lack of attention and funding on pediatric cancer.
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