Jennifer’s Inspiring Journey
Thank you to Libby Kranz for allowing us to share her blog post. Libby lost her daughter Jennifer to pediatric brain cancer and is tireless advocate for pediatric cancer research and an active participant in the Gift from a Child program. You can follow Libby’s blogs at www.unravelpediatriccancer.org
This blog all pertains to this interview we recently had … please watch if you haven’t.
4 years too late for her.
There is more weight to those words than any others in the entire interview for me… Because I am human…
because I am her mom.
and its all 4 years too late for her…
4 years too late.
That’s because I am her mom… and I struggle to not see things through those lens. But if I step back. And I remember my little girl I know also.
she will wait forever
she will fight forever…
Because that’s who she was.. and by donating her tumor.. By raising money to fight DIPG.. we are still letting that be who she IS.
She did not lose her battle… because she is still fighting.
I often get caught up in a vicious spiral.. wondering who she would be. What she would be like now had she been able to live. It haunts me and can eat away at me.. But seeing this interview.. the impact those mischievous brown eyes and perfect little smile still has.. Maybe I have been looking at it all wrong.
Maybe I need to be looking at who she actually is today. Because she has grown. She has changed. To be a solid and reliable little girl. To be impactful and powerful.
We’ve done that Tony.
By giving her to broken body to Dr. Monje… we allowed new life to be breathed into her.
And you.. anybody who has supported our family and this foundation along the way… You helped her grow into what… into WHO she is now.
They say it takes a village .. and now. In this case it is so very true. For my little girl it takes one heck of a village . And so many people have showed up.
She was a nuturer and a caretaker from such an early age… It came to her naturally more like instinct than anything else… Jennifer would pick up a crying younger sibling and sing to them.. care for them. She wasn’t always the best at standing up for herself… but she did for those around her… in subtly impactful ways.. Jennifer was the little girl who would walk up to the child alone and bring them in to play with her and whomever she was with… which was usually a group of kids.
I love her expression of joy looking on as Jonathan opened a present …
Because she was also a leader… a protector and simply, purely, good.
I think those cells of hers growing in the lab are doing just that… silently yet powerfully protecting those yet to be diagnosed… The children and their families. Those cells of her are making a difference and making her sparkle known.
I am so proud of you sissy miss
for the girl you were
and the one you are…
atta girl Jennifer Lynn…
…until there is a cure…
Recent Publications from Centers of Excellence
Harmonization of Post-mortem Donations for Pediatric Brain Tumors and Molecular Characterization of Difuse Midline Gliomas
Children diagnosed with brain tumors have the lowest overall survival of all pediatric cancers. To address the paucity of tissue for biological studies, we have established a comprehensive protocol for the coordination and processing of donated specimens at postmortem. Since 2010, 60 postmortem pediatric brain tumor donations from 26 institutions were coordinated and collected. Patient derived xenograft models and cell cultures were successfully created (76% and 44% of attempts respectively), irrespective of postmortem processing time. Histological analysis of mid-sagittal whole brain sections revealed evidence of treatment response, immune cell infiltration and the migratory path of infiltrating H3K27M DMG cells into other midline structures and cerebral lobes. Sequencing of primary and disseminated tumors confirmed the presence of oncogenic driver mutations and their obligate partners. Our findings highlight the importance of postmortem tissue donations as an invaluable resource to accelerate research, potentially leading to improved outcomes for children with aggressive brain tumors. Read Full Publication
Dr. Monje-Deisseroth and her team at Stanford University recently published a paper detailing how gliomas are able to “hijack” the brain's communication system.
Published in Nature: High-grade gliomas are lethal brain cancers whose progression is robustly regulated by neuronal activity. Activity-regulated release of growth factors promotes glioma growth, but this alone is insufficient to explain the effect that neuronal activity exerts on glioma progression. Here we show that neuron and glioma interactions include electrochemical communication through bona fide AMPA receptor-dependent neuron–glioma synapses. Read More
Congratulations to two of our Center of Excellence teams lead by Dr Javad Nazarian and Dr. Michelle Monje on their recent groundbreaking research publication. Due in part to increased access to post-mortem tissuethe teams were able to study a larger sample of DIPG tumors. Diffuse intrinsic pontine glioma is a lethal pediatric brain cancer characterized by H3K27M histone mutation. Nagaraja et al. characterize a large cohort of rare primary tumors and normal pontine tissue to reveal active regulatory element heterogeneity dependent upon the histone variant and cell context in which the mutation occurs. Read More
Research Breakthroughs Resulting from Autopsy Tissue
Why Autopsy Tissue is Needed to Empower Research