DIPG

AN INCURABLE BRAIN TUMOR USUALLY

FOUND IN CHILDREN.

Interviewed a doctor, a family member, and a researcher

WE NEEDED PEOPLE WHO WOULD BE WILLING TO

dedicate their time, effort, and career in trying to find a

cure.
that started out as an idea and experiments in a culture
dish make it through to become a clinical trial that helps children is pretty amazing.
W E A R E D I S C O V E R I N G N E W T H I N G S A B O U T D I P G E V E R Y D AY, mainly because we finally have tumor tissue available
to study.
H A V E F A I T H , A D V O C AT E F O R Y O U R C H I L D , request a free consultation and review through the DIPG Registry, or
consult experts in the field who can give you up-to-date information about current and upcoming clinical trials.
W I T H K AY L I N S F A M I LY, T H E F I R S T T I M E W E M E T T H E M , W E K N E W H E R D I A G N O S I S and had to tell them that there
was no possibility of cure and that their daughter would likely die within a year. I just found that unacceptable, and felt
like I had to do whatever I could to change it.
M O S T R E S E A R C H E R S A G R E E T H AT T H E R E W I L L N O T B E A S I L V E R B U L L E T C U R E but that curing DIPG will require a
multi-pronged approach.
T H E S L O W R AT E AT W H I C H T H E C L I N I C A L T R I A L P R O C E S S W O R K S and the fact that for everything we learn about the
disease it only seems to raise more questions about treatment is extremely frustrating. We know that children diagnosed
today still dont have a chance at survival.
T H E M A I N D I F F E R E N C E W A S T H AT I N D I P G W E H A D N O H O P E O F C U R E T O O F F E R , and I thought that was unacceptable.
I needed to devote my career to changing that.
M C K E N N A H A N D L E D H E R D I A G N O S I S W I T H G R A C E A N D C O U R A G E . She was frustrated by her loss of mobility and angry
as well. She fought every day to be as normal as she could.
T H E M O S T D I F F I C U LT T H I N G A B O U T R U N N I N G T H I S F O U N D AT I O N I S becoming close to the children and families who
continue to be diagnosed.
E V E R Y D O L L A R C O U N T S . E V E R Y A D V O C AT E F O R A W A R E N E S S H E L P S us to get the word out about this devastating
disease, so we can all work together to realize the dream of a cure for DIPG.
F I R S T, M C K E N N A S T A R T E D T H R O W I N G U P. We thought it was the flu, but after 10 days of on and off symptoms, it still
wasnt going away. Doctors told us it was a virus, which is typical of diagnosis as well, but she started to lose her balance
and then her left eye started to turn inward. All of these are classic signs of a brain tumor.
O U R G O A L F O R T H I S F O U N D AT I O N I S T O give the next child and family hope.
D I P G I S A R A R E D I S E A S E , S O I T H A S N T H A D A S M U C H A T T E N T I O N I N T H E P A S T , meaning fewer researchers have
focused on it, and there has been less funding for DIPG research. In the past 10 years though, a lot more researchers
have entered the field of DIPG.
F O U N D A T I O N S L I K E S T . B A L D R I C K S D O A N E X C E L L E N T J O B at directing funds to the childhood cancers where change
is needed most urgently, like DIPG, so participating in one of their events and getting friends and family to participate too
is a great idea. These funds really make a huge difference to finding better treatments faster.
R E S E A R C H E R S A R E N O W W O R K I N G T O U N D E R S T A N D how mutations in H3F3A and HIST1H3B impact cell function and
contribute to cancer.
O U R P R I M A R Y R O L E W A S T O G I V E O U R C H I L D T H E B E S T Q U A L I T Y O F L I F E P O S S I B L E and to do everything in our
power to make sure that we had investigated every possible treatment around the world.
S E E I N G C H I L D R E N S T I L L D Y I N G F R O M T H E S E D I S E A S E S and knowing we havent progressed far enough in our research
to save them yet is horrible.
G E T T I N G T O S E E S O M E O F T H E W O R K I D O I N M Y L A B O R AT O R Y

FACTS

Found in children aged 4-10.

0% survival rate.
Life expectancy once diagnosed: 6 months - 9 months.