Washington DC

So, June 23rd and 24th are the NMTRC symposium on Neuroblastoma and Medulloblastoma in Grand Rapids, MI.  I’ve registered and will head down.  I figure, I can strap on my tent on the bike and take off.  That will do my head wonders, I think.  The symposium looks very interesting and following is the agenda:

Session 1: Personalized Medicine Advances

9:00am Dr. Sholler and Dr. Webb , VARI ~ Progress report on NMTRC genomics trials for personalized treatment of neuroblastoma

9:30am Dr. David Craig, Translational Genomics Institute ~ Clinical uses of next generation sequencing

9:50am Dr. Jason Glover, Oregon Health Sciences University ~ Exploring novel kinase targets in neuroblastoma using small molecule inhibitor panels

10:10am Dr. Carol Thiele, National Cancer Institute, NIH ~ Epigenetics of neuroblastoma

10:30am Break

Session 2: Early Phase Clinical Trials in Neuroblastoma

10:45am Dr. William Ferguson, St. Louis University ~ Nifurtimox study update

11:05am Dr. Don Eslin, MD Anderson Orlando ~ Review of the Phase I trial and overview of the upcoming Phase II trials with TPI 287

11:25am Dr. Andre Bachmann, University of Hawaii ~ DFMO/Eflornithine: A FDA-approved Trypanosoma drug with a new purpose in the treatment of neuroblastoma

11:45am Dr. Melinda Merchant, National Cancer Institute, NIH ~ Immune checkpoint inhibition:

An update from the ongoing Pediatric Phase I trial of ipilimumab (Yervoy)

12:05pm Lunch

1:00pm Keynote ? Dr. David Krag, University of Vermont ~ Customized antibodies for treatment of neuroblastoma

Session 3: Neuroblastoma Translational Research

2:00pm Dr. Rae Nishi, University of Vermont ~   Nicotinic receptors and neuroblastoma: A new therapeutic target

2:20pm Pamela Lescault, University of Vermont ~ Genomic expression of neuroblastoma in the bone marrow

2:40pm Dr. Jacqueline Kraveka, South Carolina

Medical Center ~ Bioactive Sphingolipids in neuroblastoma

3:00pm Break

Session 4: Partnering to Bring Therapies to Children

3:15pm Creating Hope Act

3:30pm FDA

3:45pm Dr. Steve Weitman, University of Texas Health Science Center San Antonio ~ Drug approval path in pediatric oncology

4:00pm J eff Jacob, CEO Cancer Prevention

Pharmaceuticals ~ Challenges and vision in rare disease drug development

4:15pm Panel Discussion ~Moderators Giselle Sholler and Andy Mikulak

4:45pm Andy Mikulak, Advocate, Max?s Ring of Fire ~ A  parent?s perspective

4:55pm Closing Remarks

For me there are two objectives:

  • understand the direction of neuroblatoma research.
  • get to see and meet the players in this arena.

Who knows if we’ll need the help of these researchers?

Already, we’ve been very fortunate to have reached out to Dr. Giselle Sholler.  It is highly unlikely that OHIP will not cover the cost of therapy in US.   In anycase, in light of the fact that getting coverage will be a significant challenge, Dr Giselle Sholler has referred us to Dr. M. Merchant of NIH and we may be able to get some coverage.  We are in the process of applying but, our initial contact with Dr. Merchant seems positive and progressive.


What makes me sad is that if we do get any help, it will be from US, and NOT Canadian ministry of Health.


We will keep you informed as soon as we have some definitive answers.

Dr. Sholler. We have not met yet, however, we thank you !