Childhood Cancer

Diffuse Intrinsic Pontine Glioma (DIPG)

Diffuse Intrinsic Pontine Glioma (DIPG) is a rare tumor of the brainstem that occurs almost exclusively in children. The tumor appears in the delicate area of the brainstem, called the pons, which control critical body functions like breathing and blood pressure. The tumors infiltrate healthy brain tissue, causing severe symptoms. 

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Latest Diffuse Intrinsic Pontine Glioma (DIPG) grants

Michelle Monje, MD, PhD, Principal Investigator
Stanford University
'A' Award Grants, Awarded 2011
Mark Souweidane, MD & Richard Ting, PhD, Principal Investigator
Weill Cornell Medical College
Innovation Grants, Awarded 2016
Mario Suva, MD/PhD, Principal Investigator
Massachusetts General Hospital
Innovation Grants, Awarded 2016

Diffuse Intrinsic Pontine Glioma (DIPG) Heroes

Latest Diffuse Intrinsic Pontine Glioma (DIPG) blog posts

December 3, 2018

by Adam Paris

Eden is a 13 year old who loves to shoot photos and smile for her own snapshots. After being unable to walk or practice her favorite activity, dancing, for nearly a year, she was diagnosed at age 10 with a cancer no doctor had ever seen before. They tried standard chemotherapies for two different types of solid tumors similar to her cancer and after many months doctors deemed her cancer-free in March 2016.

Two years later, the cancer relapsed in her shoulder. Now, she and her tight-knit family continue to fight the cancer they named after her, Eden’s tumor, while waiting for a potential cure. 
As researchers learn more about Eden’s cancer, we wanted to give you a glimpse into Eden, the person. Check out our conversation below to learn more about this inspirational cancer fighter. 

ALSF: If you could have a superpower, what would it be and why?
Eden Green (EG): I would like to fly and be invisible. Flying is cool, but also scary. I like invisibility because I could hear conversations without being noticed in the other room. 

ALSF: What’s your go-to song to sing?
EG: I like to sing Francesca Battistelli. She’s a Christian artist so I sing her songs a lot, and then Lauren Daigle too. 

ALSF: I know you love taking photos! What do you like to photograph? 
EG: I like shooting nature a lot. I do a lot of flowers and nature shots and they turn out pretty good actually. 

ALSF: What is your favorite 2018 memory so far?
EG: My family went on a cruise in January. We went to Cozumel, Jamaica and Puerto Rico. I didn’t get to do as much this year because of my relapse. 

ALSF: What do you want to be when you grow up?
EG: It changes, but I kind of want to be a travel agent like my mom. I changed my mind from nursing because I don’t really want to do that anymore. Maybe a social worker at the hospital, but I don’t even know if I want to work at the hospital.

ALSF: What did you miss most while you were in treatment?
EG: I missed church, and we go to church a lot, so I missed going there. I like to see my friends and everything, so I didn’t get to see them really when I was diagnosed again. That was hard. I got to spend a little bit of my summer with my friends though, especially my one friend Rachel. She’s at my house like every day. I also missed going on trips that I was supposed to go on. 

ALSF: How has your family supported you?
EG: I don’t know, I’m asleep most of the time! My whole family is really funny though, but my dad he’s really funny. He’ll pull up things like the In My Feelings challenge videos to cops lip syncing stuff so he’ll watch those and start dying from laughter!
My sister Mya provides entertainment and my mom does too. Mom has to get her Fitbit steps in. When doctors come to help me I say, “Okay mom, you get your Fitbit steps in.”

ALSF: What does Mya do that helps you out? 
EG: She’s a competitive gymnast, so that helps me because I’m at the gym almost every day with her, watching their whole team. They practice every day for three hours. Most of the time before I relapsed, I was on the floor encouraging them during their routines. I actually got an award for being their team mascot. I’m like their group’s big sister because their siblings usually don’t come and watch them, so I’m always there. 

ALSF: What advice do you have for kids with cancer in the hospital?
EG: Stay strong and you’ll get through it. I’ve done it once and I’m doing it a second time so you can do it, I know you can. Keep having your faith and keep doing what you’re doing to help get through it.  

Our Q&A with Eden is the first in a series about her incredible story. Stay tuned next week for a discussion with her doctor, ALSF-funded researcher Dr. Jennifer Foster. 
 

YOU CAN MAKE A DIFFERENCE for children, like Eden, who want more opportunities to receive potentially lifesaving treatments and hope for a brighter, healthier future.

YOUR GIFT will fund the most promising, innovative scientific projects with the likelihood of making an impact.

YOUR SUPPORT allows Alex’s Lemonade Stand Foundation to continue to fund researchers around the country to develop less-toxic treatments and more cures for kids with cancer.

DONATE, today. 

 

 


 

 

October 16, 2018

by Trish Adkins

Alex’s Lemonade Stand Foundation (ALSF) has declared a war on childhood cancer.

Every day of every month of every year, the equivalent of a classroom of children is diagnosed with cancer in the United States—36 sons, daughters, brothers and sisters—all facing the fight of their lives. 

ALSF has worked to find cures—and has already made incredible strides in improving standards of care, increasing the number of childhood cancer clinical trials, helping families access cutting-edge treatments and funding breakthroughs like CAR T cell immunotherapy. Until there are cures for all children, more work must be done.

Here are 10 facts you need to know about the war on childhood cancer:

1. Children are dying.

Childhood cancer is the leading cause of death by disease for children in the United States. One in five children diagnosed with cancer will die within five years. And every year, an estimated 80,000 children die from childhood cancer around the world. 

2. The deadliest of all childhood cancers are brain tumors.

Brain tumors bumped leukemia out of the top spot in 2016. This isn’t because brain tumors are harder to treat, but because research has made enormous progress in treating several types of pediatric leukemia. 

3. Childhood cancer is biologically different than adult cancers.

Even though they share the same name, childhood and adult cancers do not necessarily share the same treatment protocol. 

4. Traveling for treatment can leave families with impossible choices.

The average cost of one hospital stay for a child with cancer is $40,000—five-times more than the cost of hospitalization for other pediatric health issues. Add another cost of traveling for treatment and families can be left choosing between putting gas in their tank and food on their table. In 2017, the ALSF Travel for Care program helped over 500 families access treatment by funding over 300 flights, 1,000 nights of lodging and 820,000 miles in gas cards.

5. Just 4-percent of the federal budget for cancer research is allocated towards children.

Imagine being told you can only eat 4% of your meal. Or you can only have 4% of your paycheck each week. For cures to become a reality, private research funding, from organizations such as ALSF, is required. 

6. The number of cures that researchers are searching for is infinite.

Childhood cancer is not just one disease or even a dozen diseasesthere are hundreds of subtypes. Researchers are searching for genetic targets within tumors and then developing and matching drugs to attack those targets, making cures a reality.

7. Big data could hold one of the keys to cures.

As researchers continue to discover targeted therapies, they can turn to data for assistance. The Childhood Cancer Data Lab, funded by ALSF, provides researchers with faster, easier access to the wealth of childhood cancer data available.

 8. It’s not just cures we need. We also need safer treatments.

Seventy-five percent of childhood cancer survivors are left with serious side effects for the remainder of their lives. Late effects of childhood cancer treatment affect organ and tissue function, growth and development, learning and memory and psychological adjustment. Treatment can also leave survivors at a higher risk of secondary cancers.

9. Accelerating the rate of clinical trials is key to accelerating cures.

Clinical trials provide two important functions: providing scientists with data and offering hope to children battling relapsed cancer. Clinical trials are expensive and time-consuming—but through the ALSF Infrastructure and Center of Excellence grant programs, institutions can access funds that support and speed up the establishment of clinical trials. 

10. Innovative collaboration among researchers will lead to cures.

The childhood cancer research community is working together to find cures. Through the ALSF Crazy 8 Initiative—a groundbreaking effort to build a roadmap to cures—researchers are working in a coordinated effort to ensure childhood cancer is just a memory. 

Learn more about how ALSF is funding breakthroughs and finding cures for childhood cancer and get more childhood cancer facts here. 


 

July 18, 2018

by Trish Adkins

When a child receives the diagnosis of diffuse intrinsic pontine glioma (DIPG), the diagnosis comes with an end date. 

Thus far, DIPG is always lethal. 

But, ALSF-funded grantee Dr. Michelle Monje of Stanford University, does not believe it has to be. Dr. Monje, who specializes in studying high-grade gliomas, is close to a powerful breakthrough that could change the prognosis for children with DIPG.

“The amount of progress that has been made in the study of childhood gliomas in the past five years is more than has been made in the last 50 [years]. It is a really exciting moment of progress and hope,” said Dr. Monje. 

Dr. Monje recently demonstrated that a certain type of CAR T Cell immunotherapy killed DIPG cells in murine models. CAR T Cell immunotherapy has been approved to treat certain types of pediatric leukemia and has proven effective in clinical trials for other types of the childhood cancer. In Dr. Monje’s lab, these engineered immune cells were given intravenously and then went directly to work clearing the tumor cells in the brain. The result: instead of seeing tens of thousands of DIPG cells, only a few remained. 

The next step: human clinical trials that could offer real hope to children battling DIPG. 

We interviewed Dr. Monje about her research, her inspiration and her experience as a woman in science. 

ALSF: Did you always want to be a doctor?

MM:  I have wanted to be a doctor since kindergarten, inspired by the father of my best friend who was a pediatric hematologist/oncologist. I remember my mother telling me, “He takes care of sick children. It is the most important job that anyone can do.” This dream was nearly derailed in high school because of a discouraging moment in my biology class when a teacher once said to me, “it’s a rare woman who has a mind for science, sweetheart.” But, I got back on track because of a wonderful biology professor (Kate Susman) in college (Vassar). 
 
ALSF: What challenges have you faced in your career?

MM: I have had enormous support from my family and from mentors at all stages of my training from college to the present day. I am enormously lucky and not all women in science have had that kind of support. But there have been challenges. 
 
I do find that, throughout my career, it has been a struggle at times to be taken seriously, to finish my sentences without interruption, to have my points heard. While these moments are less frequent now that I am more senior, can point to more accomplishments and have a few grey hairs, it definitely still happens. I have four children, and during each pregnancy I noticed a prominent uptick in moments I did not feel I was perhaps taken as seriously as my male colleagues.  
 
ALSF: How do you juggle the demands of parenthood and your amazing work in the lab? 

MM: Having four children during my clinical training, postdoctoral fellowship and early faculty career was not easy, but it was absolutely do-able. I make this point because as a young trainee, many people gave me the (unsolicited) advice that one cannot have a big career in medicine or science and also have children. That at some point, I would have to choose between motherhood and science.

I ignored that advice and it has all worked out so far. It worked out, in part, because I asked for what I needed (time to pump milk at work, access to a lactation space with a door and a power outlet that was not a public restroom, meeting times that did not conflict with daycare pick-ups) and did what was a little bit taboo (routinely traveling with my nursing baby and my mother as a caregiver, while my husband was home with the other kids, when I attended conferences or scientific meetings, once giving a talk with an infant sleeping in the baby carrier strapped to my torso.) It worked out for me because I was allowed to bend and break the rules. What I would like to now advocate for is a system in which the rules are designed to support scientists and doctors during pregnancy, lactation, and parenthood. Young scientists and doctors who are new parents are busy enough without needing to figure out the basic logistics necessary to get through each day. 
 
ALSF: What would you do if cancer was cured?

MM: If cancer was cured, and the neurological side effects of cancer therapy were also cured, I would happily focus my research entirely on the basic neurobiology of how the brain develops and how it adapts throughout life. I am endlessly fascinated by the nervous system. And I would happily administer those cures to soon-to-be healthy children in the clinic. 

Dr. Monje’s work studying DIPG was recently published in the journal Nature Medicine. Read more about her work studying high-grade spinal cord tumors, here.