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.

 

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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.

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Exciting Results from the ”Summer Sprint”

Thanks to a number of grants and private donations, in July and August the CBTP lab team was joined by several young researchers working on specific projects to advance the field of pediatric neuro-oncology. This “summer sprint” was an unprecedented effort that produced some excellent results.

Umberto Tosi, funded by a POST grant from the Alex’s Lemonade Stand Foundation, worked on a project to improve the measurement of drug delivery to the brain via “theranostic” (therapeutic and diagnostic) agents.

The usual method of determining whether a drug has been successfully delivered is to wait for a clinical response, a “wait-and-see” approach that is neither timely nor precise. If researchers could modify a drug to make it fluorescent—and therefore visible on PET or MRI imaging—they would be able to see in real time whether that drug has reached its target. The key is to make delivery of the drug visible and measurable without reducing its effectiveness. Read more

Humans of New York

Dr. Mark SouweidaneThose of you who follow the Humans of New York photo project on Facebook don’t need to be told what happened last month, when a two-week-long story about Memorial Sloan Kettering’s pediatric cancer service broke all kinds of traffic records. The final two days of the series, which had been developed as a fund-raiser for MSK, featured first Dr. Souweidane and then Julie, the mother of a former DIPG patient. The result was a veritable tsunami of comments, likes, shares, and donations. What started out as a $1 million campaign ended up with a total $3.85 million raised to support pediatric cancer research and patients. Based on the amount of money raised in those final days of the story, MSK will set aside an astounding $1.2 million for Dr. Souweidane’s work there. (As many of you know, Dr. Souweidane is a Weill Cornell Medicine doctor and a Weill Cornell Medical College faculty member and researcher, but he is director of pediatric neurosurgery at both NewYork-Presbyterian and Memorial Sloan Kettering.) For those who were not following along as it happened, visit humansofnewyork.com.

2016 “Summer Sprint”

Thanks to the generosity of a number of donors, the summer of 2016 will be an unprecedented one at the Children’s Brain Tumor Project (CBTP). With grants and gifts from families and foundations, the CBTP plans to fill the lab with an impressive array of summer students and fellows conducting research at an amazing pace. The newly funded summer positions are:

St. Baldrick’s Summer Fellows: Emilie George and Raymond Chang will be testing new drugs and drug combinations against gliomatosis cerebri and DIPG, funded by a summer fellowship grant from the St. Baldrick’s Foundation. (More about that grant)

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Registry News

Thalamic Glioma RegistryIt’s official: This summer the Children’s Brain Tumor Project launched its second pediatric brain tumor registry, this one for thalamic gliomas. We are so thankful to Katherine Godfrey, whose generosity made the registry’s new online presence possible. Katherine lost her daughter, Fiona, to a thalamic glioma in 2013. When Fiona was diagnosed, she says, it was impossible to find information about this rare tumor. We hope the new site fills some of that need for new families facing this diagnosis. The registry joins the Gliomatosis Cerebri International Registry site as part of our global effort to study these rare tumors.

 

 
Visit the new registry site at thalamicgliomaregistry.com

New Research on Ependymoma Made Possible Thanks to a St. Baldrick’s Summer Fellowship Grant and Family Donations

Medical student Scott Connors will continue his investigations into recurrent pediatric ependymoma in the CBTP lab this summer, funded by a fellowship grant from the St. Baldrick’s Foundation. St. Baldrick’s, a longtime supporter of the Children’s Brain Tumor Project, awarded the grant for research into the genomics and epigenomics of ependymoma. Much like DIPG and GC, ependymomas—which arise from ependymal cells that line the ventricles of the brain—are rare brain tumors that have been poorly studied to date compared with other pediatric cancers. Thanks to an outpouring of support from the family and friends of Campbell Hoyt, the CBTP has been able to expand seminal studies specific to understanding why recurrent ependymoma is so difficult to cure. The St. Baldrick’s grant will allow us to redouble our efforts on that research and lay the groundwork for future investigations and potential clinical trials.