DIPG/DIPT Discussion

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Just One More Day for Love, Hope & a Cure

A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Saturday, January 9, 2010

Remembering 2009

We seize hope as we enter 2010 in the world of DIPG. There are new clinical trials on the horizon and exciting research is on the way. There seem to be more researchers and clinicians focused on DIPG and our children

In the meantime, we shall not forget the brave children who were taken from their families by DIPG in 2009. There are 66 names on this list, and we certainly are not aware of every child who died because of diffuse intrinsic pontine glioma during the last year.

With much hope that this number will be significantly lower in 2010, we honor and remember:
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Tuesday, September 29, 2009

Scrapbook and fight DIPG!





In Memory of Mara Adams



  • During the month of October, Lisa Yunt will donate 20% of all Creative Memories Sales to “Just One More Day” in memory of Mara Adams.

To see the Creative Memories products available, visit http://creativememories.com/MainMenu/Our-products-and-services


Cash, check and pay-pal accepted. Gift certificates available.


For more information, contact:
Lisa Yunt at 253-333-9868 or email: Lisayuntcrops@gmail.com.

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Wednesday, August 26, 2009

DIPG Digest

*****Medical News*****

Tubulin targets in the pathobiology and therapy of glioblastoma multiforme. I. class III beta-tubulin.
J Cell Physiol. 2009 Jul 31
“This minireview focuses on microtubules and tubulin as emerging targets in potential therapy of GBM using a new class of betaIII-tubulin-targeted drugs…”

Targeting rat brainstem glioma using human neural stem cells and human mesenchymal stem cells.
Clin Cancer Res. 2009 Aug 1;15(15):4925-34. Epub 2009 Jul 28
“Genetically engineered NSCs show therapeutic efficacy against brainstem gliomas.”

Virotherapy against malignant glioma stem cells.
Cancer Lett. 2009 Jul 28
“In this review, we highlight the literature regarding the existence of glioma stem cells and their characteristics. We also discuss the potential for virotherapy, a novel therapeutic approach utilizing conditionally replicative viruses, to directly target this population of self-renewing cancer stem cells.”

Dendritic cell vaccines for cancer stem cells.
Methods Mol Biol. 2009;568:233-47
“Our results suggest that only DC vaccination against neurospheres can restrain the growth of a highly infiltrating and aggressive model of glioma and may have implications for the design of novel, more effective immunotherapy trials for malignant glioma and possibly other malignancies.”

Paediatric high and low grade glioma: the impact of tumour biology on current and future therapy.
Br J Neurosurg. 2009 Aug;23(4):351-63
“Brainstem glioma remains a tumour with a dismal prognosis but relatively little is known about the underlying biology and progress will require a concerted effort to collect tissue by biopsy and autopsy to allow appropriate analysis to identify and validate targets. A new era of molecular based therapies offers the promise of major benefits in the management of paediatric glioma but translating this promise into reality will require further understanding of the biology driving these tumours.”

Cediranib: profile of a novel anti-angiogenic agent in patients with glioblastoma.
Expert Opin Investig Drugs. 2009 Aug 12
“Cediranib is an effective drug in patients with glioblastoma, acting through inhibition of angiogenesis and normalization of tumor vasculature. Reduction of vasogenic brain edema is a key component of its treatment effect in this patient population. The primary side effects of cediranib include fatigue, diarrhea and hypertension.”

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September is Childhood Cancer Awareness Month

Team Unite Awareness Flyer http://teamunite.net/pdf/TeamUnite_SEPTEMBER.pdf
Team Unite Awareness Gear http://www.cafepress.com/teamunite/6830914


September 12, 2009

Tyler's Treehouse 5K & 1-Mile Fun Run/Walk
http://www.sportoften.com/events/eventDetails.cfm?pEventId=3992
"Spirit Runners" are always appreciated!
Olde Georgetowne Swim Club, Charlotte, NC

Just One More Day
http://www.justonemoreday.org/help/NewsEvents/Sept.flyer.pdf
Celebrating Childhood Cancer Awareness Day along with the life of Alicia Martin
Sonoma Park
2922 Sonoma Way, Viera, Florida

Love, Chloe Foundation
http://www.lovechloefoundation.org/sept09.html
The foundation will be at Rolling Hills Zoo all day long to sell monkeysWe have the cutest monkeys that we are selling at the zoo. We will also have shirts, hats and bracelets


September 13, 2009

Aimee’s Army
http://www.aimeesarmy.com/howtohelp.htm
The annual Aimee Dickey walk for childhood cancer/DIPG (brain tumors)
Nay Aug Park, Scranton, PA

Just One More Day
http://www.justonemoreday.org/help/NewsEvents/Brianna%20golf%20flyer.pdf
The Brianna Sharp Golf Outing
Country Lake Golf Course
Naperville, Illinois


September 19, 2009

Love, Chloe Foundation
http://www.lovechloefoundation.org/sept09.html
2nd Annual Kickball Jam. Games start at 9am. Teams must be registeredby Tuesday, September 1.

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For past issues of DIPG Digest please visit
http://www.justonemoreday.org/DIPGDigest/DIPGDigest.html

Please submit information you feel will be helpful to DIPG families to
http://health.groups.yahoo.com/group/DIPGFoundationsAlliance/post?postID=zoOUdF5j-M1_moxVNW60JogjJSyo9OuzV7qSCLwN1-mg3AbdOkstpxxZn5yIcvm_pI5NEgqKTIe3JcEOf2aq2VpOIQ subject: DIPG Digest


Copyright 2008 - 2009 Just One More Day for Love, Hope & a Cure, Inc. Allrights reserved. The materials and links provided on this site have beenprepared for information purposes only and should not be construed as advice oropinions on any specific facts or circumstances. Medical research concerningdisease and treatments is an ongoing process. Readers should not act upon thisinformation, but should obtain advice from physicians, medical institutions orother professionals, as appropriate.
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Tuesday, August 25, 2009

Rare Earth's Role in Fighting the Deadliest of Cancers

The following was posted on the Metal Miner blog on August 24, 2009. JOMD is excited to be communicating with Lisa Reisman regarding the role of rare earth metals in treating brain cancer.


Rare Earth's Role in Fighting the Deadliest of Cancers


About 15 months ago I went on Facebook to see if a friend of mine, who lives in Raleigh, had a Facebook page. When I typed in her name, I was taken to a link to a prayer group for Ella Newmiller. Now I knew that Ella was my friend’s daughter (we do exchange holiday cards) and quite frankly, I was in shock. Ella, now 6, was diagnosed at the end of April 2008 with a DIPG (diffuse intrinsic pontine glioma), or brain-stem tumor. DIPG is a rare form of cancer (approximately 200 children per year are diagnosed with the disease), which sits in the brain stem, or pons region of the brain. Essentially every major function within the human body (with the exception of smell) must pass through the pons (e.g. consciousness, sight, the ability to swallow etc). The trouble with DIPG is that it is inoperable and for the most part, untreatable. The diagnosis remains grim. Approximately 90% of children diagnosed with the disease do not live longer than 18 months.

And Ella Newmiller is a lucky one as she is 15 months out from diagnosis and remains in excellent health living a seemingly “normal” life as her tumor has stabilized. In my spare time, I found myself reading up on the disease, shocked to learn that the basic treatments for this disease have not changed in literally 30 years. Essentially, the patient receives steroids to reduce swelling, typically followed up with radiation. And though radiation has been found to be helpful in reducing the size of the tumor, it typically provides a 3-9 month respite before the tumor comes raging back, snatching the life of whoever has this disease.

I was shocked to learn that the treatments had not changed for 30 years. It almost seems inconceivable. But what I learned from Dr. Loice Swisher, an MD and advisor to Just One More Day an advocacy/research/support network for families facing DIPG and who also has a daughter that had a brain tumor, is that it is difficult to gather tissue samples At this time, tissue can only be obtained by autopsy donation (which is best if gathered within 6 hours of the time of death).

It’s both the imaging and treatment side of things where rare earths play a big role. Because DIPGs are inoperable and typically not biopsied because of the risk involved, they are both difficult to see and difficult to treat. The difficult to see part involves a number of imaging studies that rely upon MRI, and advanced systems and technologies, led by the NIH. The leading expert in this field is Dr. Kathy Warren whom some believe sees 20-30% of all children diagnosed with this disease. Unlike other tumors that are responsive to chemotherapies taken orally or intravenously, the blood-brain barrier limits the efficacy of these delivery methods for DIPG. The NIH, however, leads up a new area of research using rare earth metal gadolinium to aid in what is called CED (Convection Enhanced Delivery) or actual drug therapy delivered directly to the tumor.

According to Dr. Russell Lonser, who is the leading researcher at the NIH involved in CED, the gadolinium compounds with the chemotherapeutic agent. At that point, they start the infusion and use MR imaging to ensure the drug is delivered in a very precise manner. By imaging this process, researchers can closely track drug delivery, view safety implications to determine drug efficacy and perhaps most important in DIPG cases, make sure the drug is delivered to the actual tumor site. Some describe DIPG tumors as “sand in a bed of grass,” making imaging an extremely important function.

In a follow-up post we’ll discuss this particular research in greater detail and the role of rare earth metals in other medical research studies.
–Lisa Reisman
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