DIPG/DIPT Discussion

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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.

Wednesday, May 8, 2013

Their Ultimate Last Stand- McKenna Claire Foundation

When the beautiful, green-eyed, blond 7 year-old California kid, McKenna Claire Wetzel, started to throw up in January 2011 it was just thought to be the flu that had been going around.   After of week of illness and a couple visits to the doctor, her parents started to notice a wandering left eye.   The CT Scan that followed found the DIPG.

Good friends and good times- two of life's greatest gifts.    MckKenna's parents worked hard for both.   They had been told that this tumor was not survivable.   Thus, they told their oldest child that they were doing thing to make Mckenna feel better- sadly not to cure her.   She traveled to Hawaii, to tapings of both American Idol and Dancing with the Stars and sat on the floor at the Laker's game.   She continued to go to second grade and every Tuesday night was "homework parties" at her house.  The parties were more about community and friendship than homework.   As things worsened her friend, Katie, would sit for hours holding McKenna's hand in silence.  

Just six months from hearing DIPG, McKenna passed away.   As devastating as this was, the Wetzel's were making one "last stand" against the tumor.   They decided to donate Mckenna's tumor to Michele Monje's lab at Stanford.  A lab tech from Stanford flew down as a guardian for this precious gift as it came to a new home- a place striving to learn how get rid of "that stupid tumor".

However, the Wetzel's realized that funded research would be able to do more.  To honor McKenna and "perpetuate the sense of community",  the McKenna Claire Foundation was born.    In less than 2 years the foundation has raised approximately a half million dollars.    One amazing thing was last May (Brain Cancer Awareness Month) the Chevron Corporation raised $292,466 at some of their California convenience stores.

These funds have been provided to Michele Monje's lab at Stanford which had grown a cell line from McKenna's tumor.   And although cell lines haven't been easy to transport, Michele Monje's lab seems to have overcome this hurdle.   McKenna's tumor now is also being studied by researchers in England and Australia!

Some of that funding had gone to fund the position of "tumor cell line guardian".   OK,  Anitha Pannuswami's official title is laboratory manager at Monje’s lab at Stanford.   Often times salary funding is not part of grants, but I believe this has been a important factor in being able to do more in DIPG research.    Anitha Pannuswami's job is to watch over McKenna's tumor as well as 5 other children's at the Monje lab.   She also handles shipping them in ice to any researcher in the world who wishes to study DIPG.  This is defnitely increasing DIPG reasearch internationally.

This May's Brain Cancer Awareness Month, the Chevron Corporation has expanded their support through their convenience stores throughout California.  The Mckenna Claire Foundation has several other events already planned for 2013

McKenna's tumor is flying like a butterfly around the world.   Without a doubt, the McKenna Claire Foundation  and the targeted partnership with Stanford is changing the landscape for DIPG Research.   I predict both will be well worth watching.

Tumor that killed girl could keep others alive

Chevron customers raise $292,466 for McKenna Clair Foundation fight against pediatric cancer

Mckenna Claire Foundation