The Jeffers Family

The Jeffers Family is Doing Something

Sam Jeffers was in the second grade when he was diagnosed with a rare pediatric brain tumor called thalamic glioma.  His parents were told that children diagnosed with this type of tumor have a very poor prognosis.  It is a rare, inoperable tumor that is seemingly neglected by the research community.

Pediatric brain tumors are the most fatal cancer found in children.  While other childhood cancers such as leukemia have seen remarkable improvements in survival rates over the past 40 years, there has been very little research to improve outcomes for children with brain tumors because it’s so difficult to secure appropriate research funding, especially to investigate those pediatric brain tumors that are most rare.

Government grants and gifts from major foundations tend to support common cancers, where each advance benefits thousands of people. That makes sense, of course. But how can you tell a parent that not only is there no hope for their child, but that nobody is even working on it? The only way to improve the prognosis for thalamic gliomas and other rare and inoperable brain tumors in children is to study them, understand them better at the molecular level, and test innovative therapies against them.

Sam’s parents, John and Sabrina, founded the Samuel Jeffers Foundation to fund the research that children with rare and inoperable brain tumors like thalamic gliomas so desperately need.

“Our top priority is to raise enough funds to hire a full-time dedicated researcher at Weill Cornell Medicine who will study thalamic gliomas at the genomic level,” said John Jeffers.  “This isn’t just about Sam, it’s about everyone.  We have to do a better job at protecting all children.”

The Jeffers family and their extremely dedicated community of supporters have been delivering on their promise to fund a fellowship at the Weill Cornell Medicine Children’s Brain Tumor Project.  In fact, in 2018, that dream has become a reality when they made a substantial donation that will allow the lab team to acquire a dedicated researcher who will focus on this disease.  Their total contributions of almost $115,000 to the Children’s Brain Tumor Project helped the lab (1) launch the thalamic glioma registry (thalamicgliomaregistry.org), an essential tool to unite the thalamic glioma community and collect tumor tissue, (2) to hire a summer fellow who helped secure essential tumor tissue for investigation, and (3) to hire a full-time researcher in early 2019 who will take this research to the next level by sequencing the tumors, attempting to grow cell lines and avatar models, analyzing the data, conducting targeted drug screening and more.

“We don’t want any other child or family to go through what Sam went through. We want to help find a cure for these rarer types of tumors that cause so much devastation in the lives of children. That’s why we strongly support the incredible work and efforts of Dr. Mark Souweidane and the Weill Cornell Medicine Children’s Brain Tumor Project.  Together, we truly believe we can change outcomes for future families,” said Sabrina Jeffers.

You can do something, too. Donate to the Children’s Brain Tumor Project today.

To learn more about what the Samuel Jeffers Foundation is doing, visit samjeffersfoundation.org.

 

Twitter Chat – September 5

HIGH GRADE PEDIATRIC BRAIN TUMORS – RESEARCH, DISCOVERY & ROADBLOCKS

Wednesday, September 5, at 11AM (Eastern).

Weill Cornell Medicine Brain and Spine Center, @WCMCBrainSpine, invites you to participate in a Twitter chat with co-hosts Dr. Mark Souweidane, co-founder of the Weill Cornell Medicine Children’s Brain Tumor Project, David Walker, Professor of Pediatric Oncology at University of Nottingham and Chair of the Children’s Brain Tumor Drug Delivery Consortium, and The Coalition Against Childhood Cancer.  The broader brain tumor research and advocacy community will be engaging in this real-time conversation about the current landscape of pediatric brain tumors.

Special thanks to our co-hosts at the Coalition Against Childhood Cancer (@CAC2) for participating in the chat and sharing among its members who support and serve the childhood cancer community.

Follow @WCMBrainSpine@DrSouweidane , @DavidWalker40, @CAC2org and @CBTDDC as we gather online by following and posting with the hashtag #KidsBrainTumors.  The team will be interacting directly with all participants, as will various members of the pediatric brain tumor research and advocacy community.

 

Add to Calendar
09/05/2018 11:00 AM
09/05/2018 11:30 AM
America/New_York
Pediatric Brain Tumor Twitter Chat (#KidsBrainTumors)
HIGH GRADE PEDIATRIC BRAIN TUMORS – RESEARCH, DISCOVERY & ROADBLOCKS
https://twitter.com/WCMCBrainSpine

 

The CBTP Declares September to be Childhood Cancer ACTION Month

In 2012, President Obama declared September to be national “Childhood Cancer Awareness Month.”  As many know, childhood cancer is represented by the gold ribbon, and as a community we have seen the “go gold” movement generate increased momentum.

Although increased awareness = increased funding = increased research = increased success in discovering new treatment options, none of this is happening fast enough for children who are in treatment today.

The Children’s Brain Tumor Project is “Powered by Families,” and among the 50+ families on our family council, the majority are bereaved.  Awareness simply isn’t enough.  This September, we are asking you to take action.

Taking action can be a grand gesture, or a simple post on social media.  Host a fundraiser, sign up for a newsletter, share the facebook page of a child in treatment, read our latest newsletter.  Any action brings us one step closer to progress.

There is a CBTP profile picture frame that can be used for the month of September by visiting www.facebook.com/profilepicframes/ and entering “Children’s Brain Tumor Project Go Gold” in the search nox.  Please consider changing yours to “go gold” for the month of September.  Follow our posts on facebook for ideas on how you can take action this month, and, most of all, we hope you are touched by the individual stories we will be sharing about the children who are part of our family council.  The Children’s Brain Tumor Project is “Powered by Families” and we look forward to sharing their touching stories with you in an effort to raise awareness and increase action.

 

Events

UPCOMING EVENTS:

June 22, 2019: Bronxville 5K with Head for the Cure

Our charity partners at Head for the Cure are bringing back the 5K previously known as the “Bronxville Road Race” to benefit the Children’s Brain Tumor Project at Weill Cornell Medicine in loving memory of Elizabeth Minter (Bronxville High School Class of 2009).  REGISTER OR DONATE HERE.

 

October 22, 2019: No Laughing Matter

Save the Date for our second annual “No Laughing Matter” comedy night fundraiser at Carolines on Broadway.

 

 

 

PREVIOUS EVENTS:

Nov 14, 2018: Cristian Rivera Foundation 10th Annual Celebrity Gala

Cristian always said, “I Love You Ten.” This year marks the 10th anniversary of the Cristian Rivera Foundation Celebrity Gala to benefit the CBTP in his memory.  Save the Date and be sure to follow the Cristian Rivera Foundation on Facebook for event updates.

 

Nov 4, 2018: TCS New York City Marathon

Dr. Jeff Greenfield and Dr. Mark Souweidane will be joining the Children’s Brain Tumor Family Foundation on November 4 as they run 26.2 miles through NYC to benefit pediatric brain tumor research.  Sponsor a mile at greenfieldmarathon.org or souweidanemarathon.org.

 

October 19, 2018: Play it Forward Golf Tournament

The McKenna Claire Foundation will be hosting a golf tournament including a putting contest, longest drive, closest to the pin, hole in one and a ball drop after the tournament.  Read more.

 

October 16, 2018:  No Laughing Matter, a Night of Comedy to benefit the Children’s Brain Tumor Project

The Children’s Brain Tumor Family Foundation is proud to present this laugh-out-loud fundraising event at the world famous Carolines on Broadway.  Visit nolaughingmatter.org for sponsorship information and to purchase tickets.

 

 

October 14, 2018: Head for the Cure 5K to benefit CBTP

Join us for the Head for the Cure Metro NYC 5K Run/Walk as we raise funds, awareness and hope for the Children’s Brain Tumor Project! Read more.

 

Elizabeth's Hope

Sept 29, 2018: 6th Annual Round Robin for Cancer Research

Members of the Bronxville Field Club are invited to sign up for a morning of tennis and bridge to benefit Elizabeth’s Hope.  Members can register here.

 

Sept 5, 2018: Twitter Chat with @DrSouweidane – #KidsBrainTumors 

Join us in an engaging discussion on “High Grade Pediatric Brain Tumors – Research, Discovery & Roadblocks.  Visit CBTP.org for more information and to add to your calendar.

 

September, 2018: Childhood Cancer ACTION Month

September is childhood cancer awareness month, but raising awareness isn’t enough, we’re asking our supporters to take action.  Read more.

 

September, 2018: “Go Gold” with Team Campbell

Every September, Team Campbell sells lawn signs to help raise awareness.  Please contact us at info@teamcampbellfoundation.org for availability.

 

 

August 4, 2018: Muddy Puddles Mess Fest to Benefit Children’s Brain Tumor Project

A fun and “messy” celebration of kids being kids in honor of those who can’t.  For more information, visit their website for more information and to get tickets.

 

 

CBTP Published Research

OXFORD ACADEMIC NEURO-ONCOLOGY ADVANCES – MAY 2019

Combined Targeting of PI3K and MEK Effector Pathways via CED for DIPG Therapy

Raymond Chang, Umberto Tosi, Julia Voronina, Oluwaseyi Adeuyan, Y Linda Wu, Melanie E Schweitzer, David J Pisapia, Oren J Becher, Mark M Souweidane, Uday B Maachani.  Download full manuscript here.

 

ACS CHEMICAL NEUROSCIENCE – MAY 2019

Real-Time, in Vivo Correlation of Molecular Structure with Drug Distribution in the Brain Striatum Following Convection Enhanced Delivery.

Tosi U, Kommidi H, Bellat V, Marnell CS, Guo H, Adeuyan O, Schweitzer ME, Chen N, Su T, Zhang G, Maachani UB, Pisapia DJ, Law B, Souweidane MM, Ting R.ACS Chem Neurosci. 2019 May 15;10(5):2287-2298. doi: 10.1021/acschemneuro.8b00607. Epub 2019 Mar 6.
PMID:30838861

 

NATURE – JANUARY 2019

Tracking tumour evolution in glioma through liquid biopsies of cerebrospinal fluid.

Miller AM, Shah RH, Pentsova EI, Pourmaleki M, Briggs S, Distefano N, Zheng Y, Skakodub A, Mehta SA, Campos C, Hsieh WY, Selcuklu SD, Ling L, Meng F, Jing X, Samoila A, Bale TA, Tsui DWY, Grommes C, Viale A, Souweidane MM, Tabar V, Brennan CW, Reiner AS, Rosenblum M, Panageas KS, DeAngelis LM, Young RJ, Berger MF, Mellinghoff IK.
Nature. 2019 Jan;565(7741):654-658. doi: 10.1038/s41586-019-0882-3. Epub 2019 Jan 23.
PMID: 30675060

 

NATURE – JANUARY 2019

18F-Radiolabeled Panobinostat Allows for Positron Emission Tomography Guided Delivery of a Histone Deacetylase Inhibitor.

Kommidi H, Tosi U, Maachani UB, Guo H, Marnell CS, Law B, Souweidane MM, Ting R.ACS Med Chem Lett. 2018 Jan 17;9(2):114-119. doi: 10.1021/acsmedchemlett.7b00471. eCollection 2018 Feb 8.

Nature. 2019 Jan;565(7741):654-658. doi: 10.1038/s41586-019-0882-3. Epub 2019 Jan 23.

PMID:30675060 FREE DOWNLOAD

 

LANCET ONCOLOGY – AUGUST 2018

Convection-enhanced delivery for diffuse intrinsic pontine glioma: a single-centre, dose-escalation, phase 1 trial.

Souweidane MM, Kramer K, Pandit-Taskar N, Zhou Z, Haque S, Zanzonico P, Carrasquillo JA, Lyashchenko SK, Thakur SB, Donzelli M, Turner RS, Lewis JS, Cheung NV, Larson SM, Dunkel IJ.Lancet Oncol. 2018 Aug;19(8):1040-1050. doi: 10.1016/S1470-2045(18)30322-X. Epub 2018 Jun 18. Erratum in: Lancet Oncol. 2018 Aug;19(8):e382.
PMID: 29914796

 

JOURNAL OF NEUROSURGERY – JULY 2018

Volume of distribution and clearance of peptide-based nanofiber after convection-enhanced delivery.

Singh R, Bellat V, Wang M, Schweitzer ME, Wu YL, Tung CH, Souweidane MM, Law B.J Neurosurg. 2018 Jul;129(1):10-18. doi: 10.3171/2017.2.JNS162273. Epub 2017 Sep 8.
PMID:28885119

COLD SPRING HARBOR MOLECULAR CASE STUDIES – APRIL 2018

Precision oncogenomics in pediatrics: a personal reflection.

Campbell C, Greenfield JP.Cold Spring Harb Mol Case Stud. 2018 Apr 2;4(2). pii: a002865. doi: 10.1101/mcs.a002865. Print 2018 Apr. Review.
PMID: 29610396. Free PMC Article

 

JOURNAL OF NUCLEAR MEDICINE – MARCH 2018

PARP-1-Targeted Radiotherapy in Mouse Models of Glioblastoma.

Jannetti SA, Carlucci G, Carney B, Kossatz S, Shenker L, Carter LM, Salinas B, Brand C, Sadique A, Donabedian PL, Cunanan KM, Gönen M, Ponomarev V, Zeglis BM, Souweidane MM, Lewis JS, Weber WA, Humm JL, Reiner T.J Nucl Med. 2018 Aug;59(8):1225-1233. doi: 10.2967/jnumed.117.205054. Epub 2018 Mar 23.

 

JOURNAL OF NEUROONCOLOGY – MARCH 2018

Patterns of relapse for children with localized intracranial ependymoma.

De B, Khakoo Y, Souweidane MM, Dunkel IJ, Patel SH, Gilheeney SW, De Braganca KC, Karajannis MA, Wolden SL.J Neurooncol. 2018 Jun;138(2):435-445. doi: 10.1007/s11060-018-2815-7. Epub 2018 Mar 6.

 

PEDIATRIC BLOOD CANCER – JANUARY 2018

A phase II study of radioimmunotherapy with intraventricular 131 I-3F8 for medulloblastoma.

Kramer K, Pandit-Taskar N, Humm JL, Zanzonico PB, Haque S, Dunkel IJ, Wolden SL, Donzelli M, Goldman DA, Lewis JS, Lyashchenko SK, Khakoo Y, Carrasquillo JA, Souweidane MM, Greenfield JP, Lyden D, De Braganca KD, Gilheeney SW, Larson SM, Cheung NV.Pediatr Blood Cancer. 2018 Jan;65(1). doi: 10.1002/pbc.26754. Epub 2017 Sep 22.
PMID:28940863

 

PEDIATRIC BLOOD CANCER – SEPTEMBER 2017

A phase II study of radioimmunotherapy with intraventricular 131 I-3F8 for medulloblastoma.

Kramer K, Pandit-Taskar N, Humm JL, Zanzonico PB, Haque S, Dunkel IJ, Wolden SL, Donzelli M, Goldman DA, Lewis JS, Lyashchenko SK, Khakoo Y, Carrasquillo JA, Souweidane MM, Greenfield JP, Lyden D, De Braganca KD, Gilheeney SW, Larson SM, Cheung NV.Pediatr Blood Cancer. 2018 Jan;65(1). doi: 10.1002/pbc.26754. Epub 2017 Sep 22.
PMID: 28940863

 

PALLIATIVE SUPPORT CARE – SEPTEMBER 2017

Rapid autopsy of a patient with recurrent anaplastic ependymoma.

Lange KR, Fischer C, Rajappa P, Connors S, Pisapia D, Greenfield JP, Beltran H, Rubin M, Mosquera JM, Khakoo Y.Palliat Support Care. 2018 Apr;16(2):238-242. doi: 10.1017/S1478951517000864. Epub 2017 Sep 25.
PMID:  28942746 Free PMC Article

JCO PRECISION ONCOLOGY – JUNE 2017

Next-Generation Rapid Autopsies Enable Tumor Evolution Tracking and Generation of Preclinical Models.

Pisapia DJ, Salvatore S, Pauli C, Hissong E, Eng K, Prandi D, Sailer VW, Robinson BD, Park K, Cyrta J, Tagawa ST, Kossai M, Fontugne J, Kim R, Sigaras A, Rao R, Pancirer D, Faltas B, Bareja R, Molina AM, Nanus DM, Rajappa P, Souweidane MM, Greenfield J, Emde AK, Robine N, Elemento O, Sboner A, Demichelis F, Beltran H, Rubin MA, Mosquera JM.JCO Precis Oncol. 2017;2017. doi: 10.1200/PO.16.00038. Epub 2017 Jun 14.
PMID: 29333526 . Free PMC Article

 

Dr. Souweidane’s Trial Findings Published in Lancet Oncology

Dr. Souweidane’s Trial Findings Published in Lancet Oncology

On behalf of Dr. Mark Souweidane and the Children’s Brain Tumor Project, we are proud to announce that the Lancet Oncology has published the highly anticipated results of Dr. Mark Souweidane’s first-ever dose escalation study using convection-enhanced delivery (CED) in patients with diffuse intrinsic pontine glioma (DIPG). The milestone Phase I clinical trial, which investigated the safety of using CED to bypass the blood-brain barrier and administer a drug directly to a brain stem tumor site, resulted in no serious adverse effects and no dose-limiting toxicity; researchers conclude that the technique is safe to use in children.   

This publication validates a career-long hypothesis that Dr. Souweidane put forth more than 20 years ago, and was only made possible by the families who entrusted their children in his care by enrolling in the trial, and the donors who have provided the financial support to enable this research (read his inspiring blog here).

The results are so promising, they are expected to eventually change the landscape of future pediatric brain tumor protocols.   

View the article abstract here.

Read more here…

Dr. Mark Souweidane and patient, Brooke, who participated in the breakthrough Phase 1 clinical trial.

 

Olivia Boccuzzi Foundation Makes $15,000 Donation

The Olivia Boccuzzi Foundation Continues to Support the Children’s Brain Tumor Project at Weill Cornell Medicine with $15,000 Donation

Donations made in partnership with the Dyker Heights Athletic Association and St. Bernadette School have totaled $215,000 since 2015 as a result of the annual “Run 4 Kids” Marathon in Brooklyn

The Olivia Boccuzzi Foundation, named after a Brooklyn girl who died of a brain tumor in 2012, has continued to support pediatric brain tumor research at Weill Cornell Medicine’s Children’s Brain Tumor Project (CBTP), with a recent donation of $15,000. Olivia’s mom and brother, Enza and James Boccuzzi, presented the donation at the 2018 Run 4 Kids Marathon in Brooklyn on June 2nd, hosted by the Dyker Heights Athletic Association.

The Run 4 Kids Marathon has been benefitting the Olivia Boccuzzi Foundation for the past five years, resulting in a total of $215,000 donated to the Children’s Brain Tumor Project and related projects in memory of Olivia.

“Our community has been tremendously supportive of our family since the day Olivia was diagnosed with a brain tumor. When we created the Olivia Boccuzzi Foundation to fund pediatric brain tumor research in her memory, St. Bernadette School and the Dyker Heights Athletic Association didn’t hesitate in naming us a beneficiary of this fantastic event,” said Enza Boccuzzi, founder of the Olivia Boccuzzi Foundation. “Their continued support has enabled us to fund groundbreaking research through the Children’s Brain Tumor Project and we are just so grateful.”

Olivia was 23 months old when she suddenly began to experience neurological symptoms and was diagnosed with a PNET (Primitive Neuroectodermal Tumor) of the brainstem. She lost her battle less than one year later, shortly before her third birthday. PNET is one of the many rare pediatric brain tumors types that are studied daily at the CBTP lab.

In 2018, it remains extremely difficult to secure funding from government agencies, and there is little-to-no profit for drug companies to investigate pediatric brain tumors. That’s why the Children’s Brain Tumor Project is “Powered by Families,” and the Olivia Boccuzzi Foundation is a family-founded organization that is helping fill the funding gap in order to maintain momentum in the lab.

“We are so honored to have the continued support of the Boccuzzi Family and their community, in collaboration with St. Bernadette School and the Dyker Heights Athletic Association. It is the financial support from community-driven organizations such as these who are driving real change and advancing cures,” said Dr. Mark Souweidane, Vice Chairman, Department of Neurological Surgery and Pediatrics, Weill Cornell Medicine, and Co-founder of the Children’s Brain Tumor Project.

ABOUT THE OLIVIA BOCCUZZI FOUNDATION

The Olivia Boccuzzi Foundation is an all-volunteer 501(c)(3) tax-exempt non-profit organization. The mission of the Olivia Boccuzzi Foundation is to provide funds to medical or scientific personnel and/or institutions that are actively researching cures for pediatric brain tumors through medical trials and scientific research. With the help of our medical advisory board, which consists of world-renowned pediatric neurooncologists, we support the most viable research projects and trials in an effort to find a cure for brain tumors. The Olivia Boccuzzi Foundation is also committed to providing education and raising public awareness about pediatric cancers and the lack of funding that is currently allocated towards children with cancer from the government and other sources. We believe that increased awareness will lead to more funding and better outcomes. One hundred percent of all monies donated are used towards our mission.

ABOUT THE CHILDREN’S BRAIN TUMOR PROJECT AT WEILL CORNELL MEDICINE

The Children’s Brain Tumor Project was founded with the mission to improve the outcome for children with brain tumors by advancing scientific discovery and clinical research that focuses on targeted therapy, effective drug delivery and low treatment-related toxicity. The Children’s Brain Tumor Project has a single goal: to bring hope to the children and their families who are confronted with the diagnosis of a rare and often incurable brain tumor. Visit www.childrensbraintumorproject.org, follow us on facebook at https://www.facebook.com/ChildrensBrainTumorProject/or instagram @childrens_brain_tumor_project.

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

The Children’s Brain Tumor Project Named Beneficiary of Dribble Against Cancer

The Children’s Brain Tumor Project (CBTP) is proud to be named a beneficiary of the 2018 “Dribble Against Cancer” weekend hosted by Big and Little Skills Academy in Brooklyn on June 16th and 17th. Dribble Against Cancer is a two-day event that raises funds for childhood cancer research and impacted families while promoting a holistic and healthy lifestyle amongst the youth in our community.

The event consists of a two-day weekend that kicks off with a celebrity basketball game honoring survivors and families impacted by childhood cancer. It culminates the following day during the one-mile Dribble-a-Thon fundraiser alongside the Brooklyn Bridge.

The CBTP will be participating in the Dribble-a-Thon and we hope you will support our team! Register to dribble with the Children’s Brain Tumor Project or help us reach our goal with a donation.

More information on the celebrity basketball event can be found here.

More information on Dribble Against Cancer can be found here.

 

About Big and Little Skills Academy (BALSA)

BALSA, the host of this exciting weekend, is a national youth development organization focused on focused on promoting a holistic and healthy lifestyle through sports and leadership. Founder and professional athlete, Jamael Lynch, suffered loss in his family due to cancer and decided to do something about it. Passionate about youth, service and sports, he began Dribble Against Cancer to help increase survivorship and to incorporate high quality service-learning to its youth programming. Visit BALSA.org for more information.

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)