New DIPG Advances: Promise for kids with brain stem gliomas | Dana-Farber Cancer Institute

Diffuse intrinsic pontine gliomas (DIPG) in children are very rare and lethal. Dana-Farber challenged the dogma about these brain stem gliomas, and finally, the study and treatment of DIPG is moving forward. Learn more about our discoveries at www.DiscoverCareBelieve.org.
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When I started in the field of neuro-oncology, there was one disease that was understood to have no therapeutic options whatsoever. When a child was diagnosed with a Diffuse Intrinsic Pontine Glioma, it was understood from the very beginning to the medical staff that this was a child that really had no hope.
Pontine Gliomas occur right here, in a critical part of the brain. This is what decides that your heart beats, that you've got blood pressure, that you breathe when you’re asleep. No one wanted to biopsy this, because to do so would damage child. And unfortunately, in the old days of the 1960s and ‘70s, biopsies did a ton of damage, and from that came the accepted dogma that you do not have to biopsy these tumors.
The problem is because you learn nothing about the tumor, there’s no way to improve the very problem you're dealing with. We made the first proposal for this concept of biopsy and molecular analysis win 2002. In 2003, we re-presented the same idea at multiple meetings-2004, 5, 6, 7, 8, 9-and time and time again, there was just sense that people were not ready to believe that the biology and technology had advanced.
Fortunately in 2009, some of our colleagues and friends came to the same conclusion and just went ahead and biopsied 24 kids and showed that-in fact, exactly as we predicted-they could do it safely. No damage to the kids. No damage to those critical centers. And we could do the kinds of analyses that begin to allow us to understand for the first time what these tumors are. For the first time, we have some idea of the enemy in front of us, and I think we can really begin to put together the structures and platforms that are going to be needed to deal with abnormalities that the individual children have.
We needed the advances in all of the neurosurgical techniques. We need all of the advances in the genomics and the molecular understanding. But we also needed, for example, the families that raised all of the money that actually allowed all of this clinical trial. Families are the ones that have stepped up and said, “Listen, this disease-as rare as it is-is critically important to us,” pushing the science, the medicine, the treatments forward, because they've only got one commitment: it is that disease.

[@TheAlleymia]

My sweet Evylah passed away from Dipg Oct of 2015. She only survived 11 months. I will forever miss her. She loved to her 6th birthday and passed months after.

[@ShubhamBhushanCC]

I am sorry for your loss. I hope you find some solace.

[@abraarhussain786]

May your daughter RIP. IM A FATHER MYSELF AND I'M SO SORRY FOR YOUR LOSS. I CAN'T IMAGINE WHAT YOU WENT AND STILL ARE GOING THROUGH BUT I PRAY YOU FIND PEACE AND HAPPINESS. You will see her again.

[@marymillar1677]

I had never heard of DIPG until I started to watch those videos on KZbin. Over the last year they have broken my heart. All the amazing children who have been stricken with this terrifying illness and been lost to the world, saddens me deeply. They were all beautiful and so talented. I will always admire the courage and strength of their heartbroken families. There must be something we could all do to help. I now realise what it really means to be God centred and not so self centred.

[@BubbleBubblicious87]

Video is from 2015......*SMFH* Barely any progress in finding a cure today- still NO survivors...... My sweet 5 year old cousin has been battling this for a hard, long year. She will soon join the DIPG angels in heaven.....💔

[@DHRUVASINGHCHAUHAN]

Lost our daughter VARNIKA of 9 years in India due to Brain Stem Glioma ...... the best of the docs treated her but Grade IV took just 3 months to snatch this bubbly loving darling girl from us . I hope the cure is found soon , so that no parent goes through this life long trauma.

[@yshah84]

even i m wishing tht science can find the cure at the earliest..

[@courtney.22]

I am sorry you have to deal with the loss of a child. No parent should ever have to worry about that or face that.

[@abraarhussain786]

I'm so sorry for your loss. I'm a father and I cant imagine what you are going through. I pray they find a cure. May your daughter RIP.

[@sanjaySingh-rk9ss]

My sister Namrata she was 30 years old passed away from 16 Oct 2020. She survived 19 months. I will forever miss her.

[@jomarmahilum1770]

please do help my niece. shes suffering from the same disease. how to find answer and information about this cancer.. shes just 7.

[@user-wv9mk1wn1t]

Children and teens cancer we really need to know more about how we can all help.

[@nycosmopolitan]

#DoMore2CureDIPG every day, and May the 4th B4 DIPG awareness, research, cures, support

My niese just got the diagnose in Norway. She is just 4 years old. I am doing all I can to gather info about possible cures or treatments. Please if anyone have any info, me know.

+Marie Clymer Thank you Marie! I Will check:)

[@yshah84]

try Dr. Dolkar in Delhi.. the tibetian herbal way.. hope it works

[@kingharlaus1758]

Look up Charlie Teo or Suresh Dugani

[@stchee9728]

Try NYU Langone Hospital NY, the Stephen D Hassenfeld Children's Center for cancer and blood disorder , they are conducting Clinical Trials for Children with DIPG using ONC201. It is under a Doctor Sharon Gardner.

[@BubbleBubblicious87]

How is your neice? Create happy memories with her. Give her the best moments.

[@kelleyrogers6013]

How about Dr Bursinski in Houston

[@user-nw1kn6gs9r]

Is ther any hope for dipg ?

[@sampurnachakraborty3237]

My friend's daughter is diagnosed with brainstem glioma. She is only a 8 years old child. Please anyone tell me the best treatment & best place for her treatment.

[@nooraqueen2716]

There is no treatment ! Abs it’s not effective! No one has survived dpig ! It has zero survival rate

[@mcmlxii4419]

@@nooraqueen2716 You mean there is no CURE. There is plenty of treatment, but ultimately, the children do not survive. By the way, it's DIPG, not DPIG.

[@alexmartin6194]

i promise i will try to find the cure no one worry

[@BubbleBubblicious87]

No luck with that yet, huh?

[@pirogizzy3059]

@@BubbleBubblicious87 there is an herbal medicine that can cure that sickness

[@flynnpaul26]

@@pirogizzy3059 Not true.

[@mcmlxii4419]

@@pirogizzy3059 No, there is not.

[@Pranavii]

@@pirogizzy3059hey. Can you please shed some more light on this ?

[@LectronCircuits]

Absent a cure, the most effective course of action is get your affairs in order, then make hospice & funeral arrangements. Enjoy your time remaining; make it count. Cheers!