Choosing to cure DIPG as the shared top priority in oncology

JFK could send us to the moon and back because we had a shared top priority. NASA did other things too but everyone knew what was most important was getting the highest ground by walking on the moon. Not long after Nixon started the war on cancer. We are still a long way from getting the number of cancer deaths to under 400,000 a year even though this was a goal set back in 1971. If we want to make it easier to cure all cancers then the best thing we can do is to go after the worst cancers. All childhood cancers are terrible and we should make curing all of them our goal. But some are harder to cure than others. For many reasons DIPG stands out as the worst cancer that is getting the least resources. Too many people consider DIPG too difficult to cure quickly. I think DIPG can teach us more about curing cancers than any other pediatric or adult cancer because it is so hard to study. It will take serious resources and major changes to cure DIPG, but even if only a small percentage of organizations agree to make curing DIPG a shared top priority those resources can be obtained. Anyone else agree that DIPG should be singled out?

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Yes Yes Yes

Yes!! This most dreadful disease of all killed my precious daughter! She was 4!! www.anjulijacobs.com

There is no hope for those dx with this monster. It must be cured!!

Please help these children and their families so they are not seared with unbearable loss and pain for the rest of their lives.

Thank you,

Marcia Jacobs

Anjuli's mommy

Marcia,

I am sorry for your loss.  Anjuli was a beautiful child.  The word monster fits DIPG well.  

DIPG grows in the brain stem, the hardest part of the body to study, and like too many pediatric cancers it grows quickly.

The number, age range and life expectancy of DIPG patients is awful. There may be a worse cancer but I have not found it yet. 

The biggest problem in curing DIPG is how little funding is set aside to collect inoperable tumors.  

Less than one cent for every oncology research dollar goes towards examining inoperable tumors even though they cause over 90% of all cancer deaths. 

St. Jude and their partners took a small but significant step forward when they fully sequenced DIPG samples from 7 donors and then confirmed their findings with samples collected from 43 autopsies.  

But there needs to be more research.  

The NIH determined that to understand the genetics of early stage adult brain cancers they needed to collect normal adult brains at autopsy from at least 1,000 donors and untreated glioblastoma multiforme from surgery from at least 500 donors.  

DIPG samples collected from 500 autopsies is what is needed to provide oncologists with a good idea of what are clinically relevant targets in DIPG.  

Only by collecting and studying hundreds of samples do we have a realistic chance of curing DIPG this century.

I would like to study 500 DIPG samples and then share those samples with other researchers.

I have found a network of people who can make it possible to collect all of the needed samples.  

But it is hard to get the necessary funding and I have a family to feed. 

It seems incredible given the amount of money spent on cancer research each year but it is hard to get research involving inoperable human tumors funded.

Most of what gets through reviewers involves cell lines or mouse models.  

For too many funding sources most of the research they fund is based solely on cell lines or animal models. 

I know a lot of researchers that only study cell lines and animal models.  

The few researchers who study human inoperable tumors, i.e. tumors collected after death, do so part-time. 

To put this in perspective a rapid autopsy program at John's Hopkins only used about 3% of a 10 million grant for studying breast cancer on the study of inoperable tumors.  

It was probably a wise decision.  When I tried to get a similar grant from the same program that used 100% of the funds to fund the collection and study of inoperable tumors we did not even get past the pre-approval phase.  

None of the non-profits I have contacted thus far have been willing to either 1) set up a fund designed to cover the costs of research autopsies or 2) set aside a dime for every oncology research dollar to cover the examination of inoperable tumors.  

I am working hard on getting a local organization to accept funding for this type of research.

But there is only so much one person can accomplish.  

I really need members of the public to demand that more of the existing research dollars go towards collecting and studying inoperable tumors.  

We can cure what we study, but we can only study what we collect. 

Ed Croom

 

Hi Ed,

Thank you for visiting Anjuli's site and for your kind words. Yes, she was so beautiful and precious. I suffer every day without her. But I fight for research dollars all the time to help make sure her death was not in vain.

We donated Emily's tumor to research. The doctors and researchers at Seattle Children's Hospital, routinely ask parents if they can collect tumor samples upon the death of their child. Dr. James Olson has several of these tumors and he regularly shares samples with researchers all over the country. When we donated Anjuli's he told me that he immediately sent samples that very day to several researchers, one of whom needed it so badly he met the plane at the airport to get it.

Contact Dr. James Olson (Seattle Cancer Care Alliance) and he can help you. Please tell him Anjuli's mommy sent you his way.

I will be seeing him on the 28th during the Run of Hope in Seattle that raises money for brain tumor research. 100% of funds go directly to the researchers. Go here: https://www.firstgiving.com/fundraiser/MarciaJacobs/2013

I hear you when you say you have a family to feed. I am a single mom with MS and my second child, who is 6, has chiari malformation and needs a second brain surgery!! Yet I keep on going and I will never quit the fight.

I set up an endowment in Anjuli's memory at Seattle Children's. The proceeds fund DIPG research being done by Dr. Olson. Visit Seattle Childrens to find out more about that too if you would like.

Thank you for all you do in the fight against this most deadly disease. (And yes, it is THE most deadly disease - I have researched this and talked to several pediatric oncologists and DIPG is the most deadly disease - much more deadly than Ebola or ALS even.)

Marcia Jacobs

www.anjulijacobs.com

YES. Please. I don't know that anyone deserves to die this way, and to see their child die.

My son, Odin, is almost 2 and a half and was diagnosed with DIPG on October 3 of this year. We are currently undergoing radiation treatment and are part of a drug trial but know there is a 0% survival rate. Every day I wake up and wish it were all a bad dream and struggle with the idea that my active, loving superhero is dying.

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