About
- DISCLAIMER: This website is for information purposes only–not medical advice.
- .
- .
- Knowledge is of two kinds.
We know a subject ourselves,
or we know where we can find information on it.
~ Samuel Johnson (1709 – 1784)
Advances in Neuroblastoma Research meeting Stockholm June 2010
Donna Ludwinski, Henry Malarkey, Graeme Tucker, and John Rogers–all parents of children with neuroblastoma–met at Advances in Neuroblastoma Research (ANR) meeting in Stockholm in June 2010. Recognizing the need for a source of information on research news and developments related specifically to neuroblastoma formed the vision for this NB Globe Neuroblastoma News project. Non-profits from the United States, United Kingdom, and Australia joined hands to provide travel grants to allow for attending and reporting on oncology meetings:
- Arms Wide Open Childhood Cancer Foundation
- Children’s Neuroblastoma Cancer Foundation
- J-A-C-K Foundation – Join Against Cancer in Kids
- Lighthouse Laboratories
- NB Alliance (Max’s Ring of Fire and Magic Water)
- Neuroblastoma Alliance UK (Neuroblastoma Children’s Cancer Alliance)
- Solving Kids Cancer
NB Globe Editors
Donna Ludwinski, BS Chemical Engineering, volunteers her time to write articles for NB Globe. She works part time for Solving Kids’ Cancer, and serves as a patient advocate for the FDA, on Advisory Council for NANT (New Approaches to Neuroblastoma Therapy), and contributes to patient advocacy projects. She and her husband Paul have 3 sons and 1 daughter and live in northern Minnesota. Their oldest son Erik was diagnosed with high-risk neuroblastoma in 1991 at 6 years old, was in remission 13 years, relapsed at age 20, and died at age 24 in Feb 2010.
John Rogers, PhD Physics, is a research physicist at the University of Kent in Canterbury, United Kingdom. NB Alliance UK paid for his meeting registration to attend ANR. John contributes articles and editorial oversight for NB Globe. John and his wife Allison have two daughters. Their daughter Stella was diagnosed with high-risk neuroblastoma in 2009 at 17 months old, completed induction and stem cell transplant in the UK, and ch14.18 antibody therapy in the US (Philadelphia). Stella is in remission.
Graeme Tucker, BSc(Hon) Cell Biology & Neuroscience, is Executive Chairman & Scientific Director of two not-for-profit medical research bodies that he founded in Western Australia: Lighthouse Laboratories (est.2003) and Lighthouse Institutional Review Centre (est.2010). Graeme provides editorial oversight for NB Globe, and his non-profit Lighthouse Laboratories contributes travel sponsorship for attending oncology meetings. He and his wife Alison have 4 daughters, and his oldest daughter Louise was diagnosed at 10 months with stage 4 NB at Southampton General Hospital in the UK in 1988. Although given only a 25% chance of survival, she had 10 cycles of chemotherapy and surgery and is now a long term survivor and suffers no side effects.
Who pays for this?
This website is made possible by 100% volunteer effort. No advertising is accepted on this site.
.
We believe in research.
We are all in a hurry to see dramatic strides made to cure high-risk neuroblastoma. The cure cannot come fast enough for any of us. Survival has slowly improved since the 1980s:
Cancer Res 1985 45: 2843-2848 (page 2845)
The expensive, excruciatingly slow process of clinical trials research works. In fact pediatric oncology is the darling model of clinical trials methodology because of the stellar strides made in the last few decades–although we all know the majority of the strides have been in the leukemias, not solid tumors.
We are open access aficionados, and use Creative Commons license. No permission is ever needed to repost and distribute any information found here. The courtesy of source attribution is appreciated:
This work is licensed under a Creative Commons Attribution 3.0 Unported License.
Our goal is to report on published studies, meetings, and clinical trials enrolling patients. Some general information relating to pediatric oncology topics will be included, but our focus is on what interests parents of children with neuroblastoma. Hopefully you will find these posts written objectively: slim on opinion and fat on facts. You can expect the information here to be thoroughly referenced to authoritative sources. Any information shared by readers–such as email addresses or medical information–is held in strictest confidence and privacy is protected.
We sincerely welcome your corrections, criticisms, and comments.
.
.
