One of the missing links in scientific research today is funding the creativity of our researchers. The work goes with the money, and return on corporate investments are the rule, even in Academia, and unfortunately our tax dollars purposed for cancer research do not serve the neglect of the industry. Only 4% of the national budget for cancer research with NCI targets pediatrics.
Our goal for 2016-17 is to raise funds and help create attention for research projects showing the most promise for breakthrough in DIPG research, for pediatric brain tumors. We are supporting “Jack’s 12 Pebbles”, a research project for DIPG at cc-TDI, the Children’s Cancer Therapy Development Institute, a non-profit biotech devoted to eradicating childhood cancer in all it’s forms–with the goal of rendering them universally survivable. The project offers a creative technology project with the promise of saving time and extending life for DIPG children. Our 1st Annual “Relay for Jack!” event, an ultra-distance 8 hour relay race, had for a goal to raise $75,000 for this project at cc-TDI; though the 5-28 event fell short, it was a triumph for DIPG Awareness, as Congressman Steve Knight, author of HRes586 , the National DIPG Awareness Resolution was in attendance with CA-State Assemblyman Scott Wilk, author of ACR151 California DIPG Awareness Week 2014, and Mayor of Santa Clarita Dante Acosta. Jack’s Angels was awarded a Congressional Certificate of Honor for raising awareness and research funding for DIPG.
Jack’s Angels remains committed to the DIPG Research Fund at Children’s Hospital Los Angeles, which was begun in 2013; this is our local children’s research institution, and looks to partner with biotech companies like cc-TDI and Genentech and their research projects for DIPG. Jack’s Angels would like to contribute also to the DIPG Collaborative, a group of foundations dedicated to funding DIPG research–but we retain our commitment to funding creative projects like Jack’s 12 Pebbles which might otherwise be overlooked. To update, the project has commenced with the team at the Oregon Institute of Technology and their preliminary work in building a prototype.
RESEARCH LISTINGS and Helpful Organizations:
Children’s Cancer Therapy Development Institute (CC-TDI): http://cc-tdi.org, a non-profit biotech company dedicated to bringing therapies to children with cancer from the most promising research. CC-TDI is a collaboration between families, scientists, advocates, and children’s cancer organizations, located in Portland, OR, Scientific Director Charles Keller, MD., and Development Liaison and co-Founder Jonathan Agin.
Funding Neuro: The research team at the University of Bristol is led by Professor Steven Gill, a consultant neurosurgeon who is a world leader in the technique of convection-enhanced drug delivery and includes Mr Neil Barua, Funding Neuro’s first clinical lecturer in Neurosurgery. Professor Gill’s Functional Neurosurgery Research Group has extensive pre-clinical and clinical CED research experience and has successfully completed a number of studies which have led directly to clinical trials. This group has unique and world-leading CED catheter technology which is currently being used to treat patients with a range of neurological disorders including adults and children with malignant brain tumours and Parkinson’s Disease. However, success in this field will depend on matching the technology we have developed with effective drugs. The identification of these drugs is the major focus of our research group.
National Institute of Health listing: http://clinicaltrials.gov/ct2/results?flds=Xj&flds=a&flds=b&flds=c&flds=f&flds=n&term=DIPG&show_flds=Y&show_down=Y
Visit also: http://www.justonemoreday.org, http://www.dipg.net , or http://www.thecurestartsnow.org for the latest in DIPG research. http://www.reflectionsofgrace.org remains a steadfast support of families facing a DIPG diagnosis.
PNOC The Pacific Pediatric Neuro-Oncology Consortium: www.pnoc.us
Biopsy: Dr. Kieran’s clinical trial can be found here, updated to include Children’s Hospital Los Angeles: http://clinicaltrials.gov/show/NCT01182350
Accessing the DIPG Tumor: Dr. Mark Souweidane at Weill Cornell Brain and Spine Center: http://weillcornellbrainandspine.org/in-the-news/milestone-clinical-trial-dipg-approved
We are on the threshold of discovery as more awareness is raised for the urgent need for research for the invariably terminal DIPG.
Hope is on the horizon with the creation of the new DIPG registry at Children’s Hospital Cincinnati, involving an international collaboration of specialists from the US, Europe, and Australia in the standardization of data and collection of tumor samples from patients with DIPG. The Registry is supported by the DIPG Collaborative and a group of foundations specific to supporting DIPG research and those families afflicted with DIPG.“The registry is a database collecting basic information about DIPG patients as well as their medical history, imaging (scans), and any available biopsy results to link to a another database of results from testing available tumor samples. The registry is run by an international network of experts studying and treating DIPG. The data collected form a research continuum from basic biology to clinical practice to address our primary goals of 1, to have a better understanding of the biology of DIPG; 2, developing more effective therapies, and 3, developing new approaches to diagnosis, response assessment and multidisciplinary treatment and follow-up that will improve patient outcomes.”–www.dipgregistry.org
The Pediatric Brain Tumor Foundation (pbtf.us) is one of the leading sources of research funding for the latest in DIPG and pediatric brain tumor research. Their Research Advisory Board is unparalleled in its assessment and also the encouragement of graduate student work in the field.
Here in California, UCSF, Stanford University, and the Pacific Pediatric Neuro-Oncology Consortium are consistently making solid contributions to DIPG research.
Dr. Michelle Monje and her lab at Stanford University, with the Lucile Packard Children’s Hospital, is unparalleled in it’s commitment, among singular laboratories, to DIPG research. For more information, visit:http://neurology.stanford.edu/labs/monjelab/
PNOC— The Pacific Pediatric Neuro-Oncology Consortium is a network of eleven children’s hospitals that conduct clinical trials of new therapies for children with brain tumors, with the goal of improving results by translating the latest findings in cancer biology into better treatments for these children. PNOC supports one of the the latest clinical trials for DIPG seeking support for implementation, headed by Dr. Sabine Mueller of UCSF. Links to other research protocols are listed below as well.
Our children’s research institutions need support. There is less federal funding available now than ever, and most institutions are dependent upon private sector and philanthropic support. Success with this kind of research is invariably a collaborative effort; with help, we have opened the “for Jack” DIPG research fund at Children’s Hospital Los Angeles. We believe that if our researchers had more room for creativity, and more graduate school projects had funding, our science could see a quantum leap in understanding biology, and cancer. We encourage those in Southern California with a heart for DIPG to give to our cause, and encourage the national and international public to seek out the foundation that gives to DIPG research at their local/regional children’s research institution, or be resolved to help start one. Together we can begin to solve this problem where a few alone have not been effective.
Equally important is the DIPG Collaborative that has sprung into existence since 2011, a group of foundations, mostly begun by bereaved parents, to begin an international data registry for DIPG. The DIPG Collaborative also funds a Symposium for DIPG, hosted by the Cure Starts Now Foundation, every 2 years; it’s first was in May of 2011.
We emphatically believe that progress in DIPG research will bring insight for all of neuro-oncology and will represent significant advances for medicine and our understanding of biology.
IN THE U.K.
Abbie’s Army in the United Kingdom is funding cutting edge research:
LONG AWAITED CLINICAL TRIAL FINALLY HAS IT’S DAY!
Dr. Mark Kieran, Director of the Pediatric Neuro-Oncology Center at Dana-Farber Cancer Institute, is leading a national, multi-institutional clinical trial entitled “Molecularly Determined Treatment of Diffuse Intrinsic Pontine Gliomas (DIPG).”
Diffuse Intrinsic Pontine Gliomas (DIPGs) are the most malignant tumors of childhood. These tumors have been historically diagnosed based on classic clinical symptoms at presentation in conjunction with an MRI scan that shows a large, diffusely expanded pons (region of the brain stem). Due to risks of neurosurgery as defined in the 1980s, biopsy was not routinely employed, and thus, tumor tissue from patients with DIPGs has not previously been available to study. Current national strategies have approached therapy for these tumors based on similarities to the most common adult malignant glioma, known as glioblastoma multiforme or GBM. Over the last few decades, hundreds of clinical trials have been conducted in children with DIPG and the results have demonstrated no improvement in response rate or long-term outcome. These findings would indicate that there may be significant differences in the underlying biology of adult GBM and pediatric DIPG. For this reason, and in conjunction with advances in neurosurgical techniques and molecular biology, Dr. Kieran has initiated a research protocol that biopsies the tumors of newly-diagnosed DIPG patients in order to obtain direct biologic information on these tumors and adapt a treatment approach based on the result of these biopsies. This protocol took 10 years from its initial proposal to approval and accrual for this multi-institutional trial has now begun. To date, 11 of 20 sites have opened the protocol, an additional 2 sites have received IRB approval to begin accrual and are awaiting regulatory approval, and 7 sites are still in the process of completing the regulatory documents needed for approval.
• University of California, San Francisco
• Children’s Hospital Colorado
• Ann & Robert H Lurie Children’s Hospital of Chicago
• Johns Hopkins
• Dana-Farber Cancer Institute
• Children’s Hospitals and Clinics of Minnesota
• Washington University Medical Center
• New York University
• Doernbecher Children’s Hospital
• Penn State Hershey Medical Center
• UT Southwestern Medical Center
• Cook Children’s Medical Center
• Seattle Children’s Hospital
- Children’s Hospital Los Angeles
Jack’s Angels Foundation is dedicated to promoting awareness, support, and research for Diffuse Intrinsic Pontine Glioma, or DIPG. We are committed to promoting the most innovative research and clinical trials that will help shed light on the nature of DIPG and the genetic anomalies that cause it, that there be greater hope for survival. We appreciate very much your attention to the children afflicted by this uncompromising disease each year in the United States alone. The median survival time is 9 months.