McKenna Still Shines

In January 2011, our healthy, active, intelligent 7-year-old daughter, McKenna, came down with what we thought to be a stomach virus. After a week of doctor visits, seeing her left eye begin to stray and her mouth begin to droop, we insisted on having a CT scan. Childhood cancer was never even a consideration in our minds before that scan, but less than 24 hours and one MRI later, we found ourselves surrounded by doctors at the nurses’ station in the PICU waiting to hear the diagnosis.

It was in the midst of that chaos that we were told our daughter had diffuse intrinsic pontine glioma, or DIPG, an extremely rare pediatric brain tumor that typically strikes between the ages of 5 and 7, infiltrates the brain stem, and has a 0% survival rate. Read more

Support H.Res.69 – The National DIPG Awareness Resolution

H.Res.69 – The National DIPG Awareness Resolution is the first step toward generating widespread action, which leads financial support for funding the best research.  That’s why the Children’s Brain Tumor Project supports H.Res.69 to officially establish DIPG Awareness Day as May 17 (which also happens to be our very own Caitlin Downing’s birthday).

H.Res.69 was recently introduced to congress by Rep. Stephen Knight (CA) and we are asking our community to put forth a concerted effort via social media sharing and letter-campaigning to support these efforts.

As written in the resolution, H.Res.69 would ensure that congress:

(1) supports the designation of “DIPG Awareness Day”;

(2) encourages all people of the US to become more informed about DIPG and the current challenges to the medical research system in designating sufficient research funding for pediatric cancers;

(3) supports expanded research to better understand DIPG, develop effective treatments, and provide comprehensive care for children with DIPG; and

(4) encourages the National Cancer Institute to elevate their consideration of mortality rate of a type of cancer as well as the life years lost as significant factors considered during the grant application process.

Please write your local representatives and ask them to support H.Res.69 and share via social media with the hashtag #HRES69 to encourage your followers to do the same.  Visit https://www.house.gov/representatives/find-your-representative to find your local representative, feel free to use your own variation of the letter template below, and send it off! Thank you so much for your support.

 

++++++++++++++++++++++++++++++

 

To the Honorable Member of the United States House of Representatives, and staff,

In 50+ years, of clinical observation, there has been no change in the outcome for the hundreds of children diagnosed with DIPG—diffuse intrinsic pontine glioma.  Sadly, parents must be resigned to witnessing the death of their beloved children in utter helplessness, not knowing exactly when, how, or ultimately why, they will die. With treatment, the median survival time is 9 months post diagnosis. The devastation of this experience cannot be understated, and there is a strong movement across the US for a DIPG Awareness Day and greater consideration for these children, as written in H.Res.69

Parents have been expected to accept that there are no solutions for their children because their numbers don’t warrant the investment; now we parents are asking our Representatives in Congress for help.

The DIPG Awareness Resolution represents the acknowledgment of funding loopholes through which our children are lost in our medical research system, and the desire for greater consideration for the lives of our children facing certain death. You are our greatest hope for change. A DIPG Awareness Day represents something that our families never have from day one: HOPE, hope that we are actively seeking solutions for them because their lives matter, that they have a certain value deserving of recognition and prioritization.

Thank you for your consideration, as this was written by parents, for these children and their families, with Congressman Steve Knight (R-CA-25). We feel there ought to be acknowledgement and conversation about what we can do together to find solutions to funding urgently needed research for children facing certain death. H.Res.69 offers a practical avenue to do just that, not by imposing blame but in welcoming collaboration for effective solutions and promising ideas.

The text is brief and to the point for your consideration. From our National Community, we thank you with all of our hearts

Very Truly Yours,

 

 

As written by:

Janet Demeter
DIPG Advocacy Group, Organizer
818-400-2724, jacksangels1@gmail.com
32520 Wagon Wheel Rd., Agua Dulce CA 91390
Adam Brooks, adam.brooks@mail.house.gov 225-1956
Representative Steve Knight (R-CA-25) Molly Fishman, molly.fishman@mail.house.gov 225-3531
Representative Jackie Speier (D-CA-14)

Dr. Greenfield Invited to Join Englander Institute for Precision Medicine

Dr. Jeffrey Greenfield, Co-Founder of the Children’s Brain Tumor Project, has accepted an invitation to become a standing member of the Weill Cornell Medicine Englander Institute for Precision Medicine. Dr. Greenfield’s formal affiliation with the Institute is in recognition of his work in genomic sequencing of pediatric brain tumors and his ongoing research collaboration with the Institute.

Read More…

The CBTP is proud to be awarded a St Baldrick’s grant for childhood cancer research!

The St. Baldrick’s Foundation, the largest private funder of childhood cancer research grants, has just announced its newest round of grants, and Weill Cornell’s Children’s Brain Tumor Project is proud to be a recipient.  St. Baldrick’s has committed to grant more than $2 million to support the next generation of St. Baldrick’s Fellows and Summer Fellows at 27 institutions across the U.S.

Read more

We Need You to Help Us Light Up the Lab

Light Up The Lab

One of the unique things about the Children’s Brain Tumor Project laboratory is how personally we all take this work. Nothing shows that quite like the hallway of our lab, which is lined with photos of children whose lives were claimed by these terrible, incurable tumors. We see these faces every day, to remind us that we are not just scientists working on cells. We are working for children, and for the families who love them, in a daily race to find new treatments. Every picture on our wall tells us the story not just of a child but of that child’s devastated family, and as we walk past each one we remember why we do what we do: to create hope. Read more

Lab Update: August 2017

These are exciting times in pediatric neuro-oncology research, and nowhere is that excitement felt more than right here in the CBTP labs. We have recently doubled in size, thanks to the generous support of our families and friends. Where once our two teams worked side by side, taking parallel paths toward our common goal, now we are four. And we couldn’t be happier about that. Read more

Family Corner: Kathy Arabia

It is always a heartwarming and emotional experience to meet with other families who have lost a child to brain cancer. I had the true pleasure to connect with a group of parents, all of whom had lost a child to the rare brain cancer gliomatosis cerebri, at the Second International Gliomatosis Cerebri Conference, which was recently held at the National Institutes of Health.

The powerful emotions we felt were highlighted by the fact that we were there with a number of the brightest neurosurgeons, neuro-oncologists, researchers, and others who were fully committed to learning more about this cancer, sharing research, and finding effective treatments so no other families would have to go through such a loss. Read more