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.

Read more

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)

Read more

Winners, Top Fund-raisers, and Raffle Winners

bronxville-road-race-2014-kids-start
The inaugural run of The Bronxville Road Race was a tremendous success! With more than 500 participants and contributions from sponsors, runners and walkers, local businesses, and donors from coast to coast, we more than met our $100,000 goal!  Congratulations to overall winner Josh Hibbs of Yonkers, and to everyone who came across the finish line for us. (Get full results here.)

Please accept our deepest thanks to all who participated or helped, especially those who raised so much more than the $250 we had asked for. The following 18 people and teams raised more than $1,000 each, for a total of almost $40,000!

Top Fund-Raisers

  1. Team Denison
  2. Debbie Scully
  3. Stacy Ulahel
  4. Emma Hill
  5. Shoshana Aminov
  6. Jacqueline Paige Grand Pre
  7. Licia Hahn
  8. Jill Fisher
  9. Ashley Mestl
  10. Karen Driscoll
  11. Kaitlin McTigue
  12. Maria Gratton
  13. Cindy Rajacic-Peiliker
  14. Laura Romeo Sobel
  15. Anna Mudrick
  16. Mimi Greenfield
  17. Tori Flannery
  18. Eli Bunzel

Thank you, thank you, thank you!

Raffle Winners

Congratulations to the winners of the Elizabeth’s Hope raffle! If you were not present at the time of the drawing, we’ll be getting your prize to you in the mail soon.  The winners were:

  • Cocktail plates donated by Bloomingdales: A. Hoogkamp
  • SoulCycle gift card: Barbara Taylor
  • Maison Rouge gift certificate: Mark Souweidane
  • Fabio’s Hair Salon gift card: D. McCaffrey
  • Underhills Crossing gift card: Alexandra Howson
  • Gretchen Scott shopping spree (two winners)
    Louanne Mitchell
    A. Gold
  • One-week stay in a luxury villa in Mexico, donated by Inspirato: Mimi Greenfield  (and no, it was not a fix — we have witnesses to the drawing!)